Promoting awareness through 'telling our stories'

You might think that a blogger who’s prepared to publicly share his experiences, thoughts, analysis and irritations so readily would be in favour of disabled people ‘telling their stories’ as a vehicle for improving awareness of disability. Well I’m not.

 

Many disabled people have been asked at some time in their lives, to talk to their colleagues, doctors/health workers etc about themselves and their experiences, on the basis that it will help improve things for others. There are many well-described accounts of how the experience has been far from empowering or impactful on change, but instead personally diminishing either in the experience itself or its reception.

 

I have serious concerns about what I consider an over-simplistic practice of encouraging disabled people to ‘tell their stories’ in semi-public contexts as a means to improving awareness of disability, and about ‘awareness-raising’ of disability equality through using individual experience to improve disabled people’s position in the workforce, service delivery and/or in society generally.

 

For those who aren’t familiar with this practice, it is a belief that has developed around the idea that the most powerful social change comes about through people who face discrimination of one form or another, ‘bringing the issues to life’ by describing their personal experiences to people who don’t share those experiences. The idea behind it is that individual, personalised human stories are themselves powerful agents in the change process and can successfully support policies, action plans and codes of practice. There are various techniques for promoting story-telling, often a workshop or training session - where one or more speakers (each perhaps representing a different form of discrimination or different aspects of one) are invited to talk about themselves and their lives to the audience of colleagues, service providers or other professionals.

 

Guidelines on accessibility, employment practice etc are important tools in improving systems and behaviours, however, ethical issues alone are often not tangible enough to grasp and therefore, to bring in practical examples from people’s real experience can usefully put the guidance into context. So for accessibility guidelines to include explanations of for example, what it is like for a lip-reading Deaf person to be confronted by a virtual meeting where many participants speak with their cameras turned off, or of what a blind person using a screen reader hears when navigating an inaccessible website, are potentially useful ways to ensure that the guidance makes sense to those who use it. My problem is at the attitudinal end of the change continuum, which is where the encouragement of ‘story telling’ tends to be pitched.

 

It encourages the disclosure of a level of personal detail that would normally be only shared in chosen inter-personal relationships of some standing. To encourage the belief that ‘the more you tell about yourself, the more you will help change things for others’, is in my opinion a myth and  does nothing to honour different layers of self-disclosure in different kinds of relationship. There is a world of difference between disabled people choosing to share their personal experiences with other disabled people in supportive contexts, and that of using them as a wider  awareness tool. Similarly, there is a difference between using anonymous quotes to enhance a policy or guidance and having a person giving a live personal account to an audience.

 

Importantly, the awareness and understanding that personal story-telling favours, is of individual experiences rather than collective ones and as such, far from making the personal political, serves to individualise that which is political. It places all the responsibility to convince in the hands of the story-teller and on their performance. However, there is no way to legislate for the reception of their ‘story’, some will be emotionally moved, others spurred on to do what they can to ensure that they don’t perpetuate such treatment, some will think the teller over the top/exaggerated, while others do not believe them, some will think them too emotional, others not emotional enough... and so it goes on.

 

I’m reminded of being in the audience of a show led by people with learning difficulties back in the mid 1990s. It was a music and poetry performance, where people were performing their own poetry about their lives, injustice, segregation, ill-treatment. The performers (and the staff supporting them) had a clear intent that the show would serve as a powerful     agent of change. Milling amongst the other audience members afterwards, I overheard many people saying how ‘powerful’ it had been. However, in every case, this was said in an almost tearful quivery  tone of voice that indicated something that has been emotionally powerful and tugged at the heartstrings, evoking pity rather than them having been angered by the messages and ‘moved’ to supportive action. As I’ve said here before, it is very difficult for disabled people to ever be able to truly know and trust how we are received whatever our intent.

 

So, what is it that disabled people need to improve awareness of? Most of the arguments have been had over twenty years ago and while of course things have developed and been nuanced (not least as technology has moved on and found new ways to include with one hand only to exclude with the other), there is a whole body of awareness of the obstacles and barriers. Employers too, especially larger ones, would typically undertake audits of their practices, therefore they should know what is going wrong and what they need to fix. So again, what is it that the stories need to be told for, other than to convince. Disabled people are expected to put ourselves through the ordeal of performing publicly to our colleagues, doctors/social workers/support workers/whoever, and the reception of our performance defines whether or not the issues we have spoken of are taken seriously and acted upon ... or not.

 

I suspect, although widely desired, ‘awareness’ is probably more of an erroneous wish.  I am sure that it is not a means to equality or to social inclusion. What do people do with this sought-after thing they call awareness, other than use it to patronise, show off or increase the illusion of their social capital through ‘virtue signalling’… and what are they showing off? I’d say they are inadvertently displaying their lack of connection with disabled people.

 

It tends to be assumed that once someone’s awareness has been raised, their attitudes and behaviour will inevitably improve. I’m always interested in why some people and organisations require awareness-raising, where others, just seem to find out about people in a more natural way, their needs, culture etc, without making a big deal of it.

 

Disabled people should not have to carry that burden of responsibility for people’s misguided need for disability awareness. My view is that the people who want awareness are probably the least likely to be able to behave straightforwardly with disabled people because they want to know ‘about’ us rather than to know us.  Awareness raising through people telling their personal narrative is a very individualistic way of approaching a broad social issue, but more importantly, despite the intent of the organisers of such events, only serves to maintain the story tellers at arms length and does nothing to foster greater relationship or inclusion of disabled people in communities. If anything, once a disabled person has been in this position in their workplace for example, I suspect that they become something else to their colleagues – perhaps put on a pedestal, they become somehow unquestionable and ‘special’. This can result in disabled people being put in the position of competing against each other for holding different views or wanting different mitigations for the same problem and these battles can be won on the strength of their performance and/or how compelling their argument is seen to be (rather than .

 

Story-telling can also be a powerful magnet to disabled people who want to share their experiences, show how they have overcome barriers or to vent their anger. My concern though is that in doing so, they inadvertently buy into a set of ways of thinking about disability as well as an entirely unpredictable reception (that they may like or abhor)

 

I hold the hope that connection with disabled people, our lives, hopes, dreams aspirations, idiosyncrasies, interests, dislikes etc, comes through disabled people being properly included in our neighbourhoods, communities, workplaces, having relationships, children, friendships, struggles, shared experiences along with everyone else. It doesn’t come through a voyeuristic desire to hear about us in our underrepresentation.