Stories, storytelling and storytellers...

I am lucky enough to have a friend who can spin a proper yarn. Her phone calls transport me, to different lands with exotic players... who knew the world of education could be so enthralling. I hope I am a rewarding audience, I to gasp or giggle in all the right places. The performance is a shared experience, the tale weaved between us. I never think to question the truth of the words, within them our reality is created. A joy and a pleasure.  To miss quote Robison, without me she wouldn’t be a storyteller - just a woman speaking into the void.

 

I often think the legacy of scientific research is a belief in one truth. I am thankful the social sciences have offered us a plural. I hope we’ve all had the joy of learning things that tilt our private worlds on their axis. With implications falling like dominos in fluid sequential movement – rarely tbh. 

 

My such moment was being told the story of the Disabled people’s movement, its storytellers and its truths.  The Social Model was presented as a truth, one was new to me, part of an alternative vision. Since then I’ve discovered a world full of tellers with stories of equally compelling landscapes. All have a shared perspective, a direction, of a redefined world. One I’d complacently never questioned.  

 

The story about the Social Model was so powerful it was hard to ever speak of disability without thinking of the pioneers. In a day I’d jumped from 6 to 9 never then able to see one without the other. It didn't erase other stories or tellings, but sometimes spoke a truth to my own experience. Unfortunately, while in my heart I still felt I am a problem having impairments, now occasionally if I concentrate I can think myself free of the oppression Disabled people face – the Medical Model. Every tale that speaks to the prejudice, institutional discrimination and global inequality - reinforces the truth of my story in any number of small ways.

 

Why do I slip back in times of stress, fatigue or difficulty? Well unfortunately tales about disabled people - in society’s stories - are far more available and plentiful which makes them difficult ignore or contradict. As Saint or Sinner the presentation of disabled people is polarised. Therefore, it requires a lot of effort to stand against the weight of common assumptions. That is because unthinking is much like driving a cross-wired car, turning left to go right only works while you are vigilant. The minute you rely on instinct - driven by bias - you are off the road or in oncoming traffic. CRASH!

 

Unthinking is far harder than going along with an existing storyline. Across many cultures, in tales disabled people are described as costly and/or deficient. These myths are woven into everyday stories, so deeply they are barely noticeable. And while many people have come to believe that these tales need serious contradiction, more subtly Disabled people themselves are treated as unreliable tellers. This maybe because our experience seems too unusual, it jars with the shared story. The alternatives Disabled people put in words chimes against the assumptions told about us. So like the car we crash against both truth and teller. Recent personal examples:

◦            I told a friend I lived in West Yorkshire - "... it doesn't exist" he said.

◦            I answered my mum’s name was Caroline - the woman asking said "no it’s Claire".

I could go on... and I’m not denying I talk utter rubbish on occasion. But you’d be surprised how many times a week people correct me purely because my truth doesn’t chime with theirs. It’s a six they cry, in the face my truth - if not indisputable knowledge. I particularly like the wagging finger that goes with "if you lot had done your activism properly!!” or the "if you could agree with each other”. Yes, because Martin Luther King Jr’s dream took a decade to achieve and all feminists have one definition of sexism!!!!

 

In own research I felt I had to present the literature chapter as an analysis because in matters of human rights the stories I read appeared distorted. More widely I feel Disabled people haven’t been trusted as storytellers - even on matters of disability. One week I read 800 papers I had found by typing ‘disability’, ‘disabled people’ or ‘people with disabilities’ in the search criteria. Only about 2% even alluded to a political strength, a theoretical view, or the  interests of Disabled people as a group - a shared voice. I was actually shocked how much was written about disability without legitimacy - as above, clearly West Yorkshire doesn't exist.

Disclosure, individual choice and privacy

 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.

 

An understanding of power and language

Speaking as a writer not an author, and daunting as it is, here is a story. Years ago I stood outside a classroom, waiting for my turn to teach, listening to the woman ending her session. ‘Black Majority’ she said ‘is the way I articulate Black people’s power in the world. I use the words to counter the oppression – the racism - they face’. She went on to explain that it was not the number that marks a minority, but the silencing imposed on experience that minimises group voice. I remember her talking about the whiteness of her world, where few Black people were visible - on streets, in text, in storytelling. She said she needed to frame the strength of a group voice against her own privilege. That was decades ago, it was my first memorable lesson in anti-racism. It stuck. 

To inform my research I was guided by the storytelling of Black authors – a cultural immersion (Gladwell, 2008). Their stories helped address my own racism, but more importantly helped me write more accurately about the population I was focussing on. Foremost, I wanted to convey in my own storytelling that many of the people I was speaking about were in receipt of racism. I found myself resonating to a growing collection of stories, nodding in recognition of the pain - if not the words that caused it. I began to recognise, but not identify with, the racism carried by seemingly harmless words. I empathised with Reni Eddo-Lodge’s (2017) wish not to talk to white people. I understood Sara Ahmed’s (2017), feelings of being viewed as a problem. Importantly, I acknowledge that there are aspects of their experience I’ll never have to endure. As Pease’s (2013) story of the mirror illustrates, in the morning I never have to consider the problem most people will have with the colour of my skin. That’s my privilege. 

As l made my journey, I continued to look out for the characteristic way different stereotypes drive the character of each discrimination. It was a Black woman who taught me that she understood being Black as a choice [her emphasis in capitals]. She spoke to me of her choice to articulate her belonging to a group of people in receipt of racism. My privilege, she explained was not being white so much as not having to endure the racism she experienced every day - the prejudice, institutional discrimination and global inequality imposed on a Black world majority. As a Black Disabled woman, she said her parents had taught her to frame the disablism she faced as similar to racism. Working in a similar way to other isms, but different in its specific character, a triple whammy. 

It was in conversation with a Black trainer that I learned in what way the prejudice she faced was different from mine. My colleague’s name is Smith, yet she tells me how often people ask her to spell it. That’s racism, she says - their prejudice – people are unaware that they expect her name to have an exotic spelling. She is from Peckham she adds pointedly ...

In the words of Marianne Coleman; ‘there are more differences within groups than between them’. ‘Them’ might be useful in pointing to individuals in a park, it has direction and is specific. But trying to identify who is Black, Gay or Disabled it is not helpful. it is probably more true to say that there are people facing racism, homophobia, ageism, transphobia, religious intolerance and ableism ... WHEREVER we gather.

Because the myths about groups have different characters, I feel that we need a conversation about the cumulative negative impact of -isms more than ever. As those in receipt of double or triple prejudice are undoubtedly under greatest likelihood of exclusion in society and in its storytelling. ‘AND’ I find is more useful than EITHER / OR in these matters. We have a long way to go to address racism AND all other forms of oppression, AND we need not choose between them to work under a duty and with agency to dismantle the stories that threatened their lives.

An anti-racist language was easier to adopt than one with a more Intersectional fluency. I think this is because there is such a pull on us to see things in binary, sometimes the ‘them’ and ‘us’ is formed in our hearts before we’ve properly had a chance to un-think it. As a writer I found it hard to talk about ‘we’, avoiding ‘them’ and ‘us’. Statements of identity are personal, and multifaceted. It would be hard to be on the end of any spectrum.

These matters became spiny issues in my thesis. Because when dealing with a storytelling that silenced Disabled people’s stories (Coleman, Brunell, & Hauge, 2014). Not only was it hard to find ‘disability’ on the list of Equality and Diversity literature, but it was rare to find disability studies added to a wide range of critiques. It is telling that early disabled campaigners, fighting for human rights made links between the oppression they faced and the one that drove the apartheid that harmed Black South Africans (Finklestein, 1999). Unlike Ms Smith, I have an unusual maiden name: Mulhern. From an early age I remember my mother having to spell - M U L H E R N - every time we went anywhere requiring identification. In my head I heard the chant as I learnt to write … in two different languages. Yet, I can remember people adding Es, As and Ss! Was it because I could not be trusted to spell my own name correctly?! I also observe, that many of my friends will rarely have people invading their privacy, asking rude questions or telling them what to do and what to say as often as I do. I’m disabled, they are not, that’s their privilege, however those that are allies speak to the power of Disabled people.

 

Bibliography

Ahmed, S. (2017). Living a Feminist Life [Kindle Edition] . Duke University Press.

Coleman, J., Brunell, A., & Hauge, I. (2014). Multiple Forms of Prejudice: How Gender and Disability Stereotypes Influence Judgments of Disabled Women and Men. Science+Business Media, 34, 177–189.

Eddo-Lodge, R. (2017). Why I’m No Longer Talking to White People About Race [kindle edition]. London: Bloomsbury Publishing.

Ferguson, P., & Nusbaum, E. (2012). Disability Studies: What Is It and What Difference Does It Make? Research & Practice for Persons with Severe Disabilities, 27(2), pp. 70-80.

Finklestein, V. (1999). Professions Allied to the Community (PACs) . Therapy Weekly, 1-9.

Gladwell, M. (2008). Blink - The Power of Thinking Without Thinking. London: Penguin Books.

Pease, B. (2013). Undoing Privilege, unearned advantage in a divided world. London, New York: Zed Books.

 

 

So... I had a melt down!

The following is a tidy up of a thread I posted on twitter on Sunday. While in no way ‘viral’ it was a little snuffle. 

 

I’m not denying my own privilege, but the past few weeks have been tough at times, despite ample room for personal freedom...  Sadly, Saturday night was a time of great distress. The tweet Matt Hancock posted celebrating the reopening of a racecourse sent me over the edge. I was left struggling, with few words to be honest. I sat in anger, rage and hopelessness. Even cheese, that well known panacea, did not help.

 

Matt Hancock is the Secretary of State for Health and Social Care, he has responsibility for the well-being of all, and the return to health of many.  In equal measure he needs to consider the whole population, and the voices of those most disadvantaged by the impact of inequality. Our nation’s growing health inequality has been described as societal injustice. Therefore, while understandably his focus needs to be on the entire population, he also needs to  respond to the needs of groups within it most threatened by disadvantage. This means searching for voices that are often ignored in strident headlines - stories of keen interest – that shout loudly, thundering over the more devastating issues raised by some networks.

 

It seems to me that for some years Matt Hancock has managed to remain silent on matters of Human Rights. Ignoring the call of individuals, and their families, who are locked in institutions or denied the help they need. Deprived of the most basic freedoms, and denied adequate support, many have no escape from degrading treatment, cruelty, violence and sometimes murder. As building evidence shows, institutionalisation has provided opportunity for Disability Hate Crime to grow, which speaks volumes on a culture where increasingly atrocities are ignored because they are behind closed doors. 

 

So why is the celebration of horse racing so important at this moment in time?   With his position comes a duty to know the evidence regarding the cost to society of gambling. His power gives him access to evidence that few are privileged with. The literature on well-being and social policy present the likelihood of addiction as having a significant negative impact on communities, with the harm extending beyond individuals to families, police and health services. For many the implications of addiction result in death. Yet it seems that despite his position, his focus is largely on the fun of a few rather than the health and the well-being the many... [I say again Matt Hancock is the Secretary of State for Health and Social Care]

 

Long before the pandemic much work was needed to reverse the harm done by decades of ever decreasing investment in social care. With many organisations having to pick the pieces of the underinvestment in state provision. endless tenders reducing the shares strength to support those facing the edge of the edge, those pushed into poverty, running on empty on treadmills, stressed and afraid without safety nets.   Let’s be clear successive governments and their austerity measures, universal credit and PIP for example, have pushed many into poverty. More harm has been done to marginalised groups than inaction would have imposed.  The voice of affluent privilege has helped vilify groups already having to cope with gross injustice. Despite resistance, growing numbers within the civic movement have been ignored. Their voices hushed amid the cries of taller tales - the limelight of those most privileged.

 

Policies drawn up in the name of efficiency, austerity, bottom line and cost. Hardly demonstrating the values of a caring and compassionate society where all may flourish. So while the institutional silos chug on, reiterating tales about the elite, harm is dismissed as result of individual failure - rather than society’s need to act to right their negligent administrations. 

 

I don’t think I am standing against those obviously so immune to society’s injustice to deny them pleasure ... or am I? The internal rage is raw! While too many have died, others celebrate what may kill. Thankfully last night the outrage was palpable, at last the hypocrisy wasn’t applauded but called out. 

 

When later matters of shielding were thrown back to the public, people started questioning their survival in terms of ‘despite’ a government they can no longer trust. One thing remains for me, in their devotion to money, greed and privilege, those in a position of power are using it with contempt and cruelty. I hope this government’s accountability is shown to be lacking in time, as its negligence described as gross failure. Their words seen as without legitimacy, speaking only the moneyed, to further the advantage and pleasure of an elite, leaving many of us with sole option to turn away in disgust.

Dr Chapman