Trust me, why would I lie!?

My thanks to Touch Consulting, and the Joy FE community, who makes the #FestivalFridays conversations possible. A learning network of courageous practitioners who are resistance to the established norms that can hinder the well-being of those struggling to flourish within education.

I enjoy the enthusiasm in the lead up to a presentation, there’s an energy that comes of being wanted. A thrill, and anxiety, that is motivating and exhausting in equal measure… I’m no longer surprised that the linear story I have in my head, put into text with supporting 34 snapshots, rarely ever matches the messiness of the conversation in the room. Years of keynotes do not compare well to the joyful chaos of building understanding in the room.

I started with a trigger warning, not because it’s fashionable, but because we know that 9 in 10 disabled people report hate crime every year.  Therefore, we can assume that violence is recognised in most rooms, because one in ten individuals can identify as disabled- should they wish. I explained that while the story was mine, we were having a professional dialogue, so the storytelling was framed by evidence and theory [Disability Studies among others]. 

I am sharing professional wisdom - that’s 30+ years of conversation.  Like discussions about critical race or gender, ones about critical disability is a specialised subject with an extensive knowledge base [you wouldn’t stop random individuals on the street as it could be potentially traumatising]. 

Othering emerged fast as an emotional tension in the room; talking about disability is uncomfortable because the ‘them’ and ‘us’ continuum becomes more visible when we talk about who’s in/out. I too get tongue-tied and stutter in the choice of ‘them’ and ‘us’. Should I identify as a disabled author, or am I writing as an equal scholar in a discipline I've studied for decades - leadership. I'd prefer to let people identify as Disabled or non-disabled, rather than assume ... get it wrong. 

Clearly, there’s more to it than what’s wrong with you… what about society? Where’s the difference, mobility, impairment, glasses, dyslexia?  The question is do you identify, surely? Do you face ableism? One in ten of us may choose, that's a huge group. 

Truth is terminology, or lack of it, hinders definition or clarity. A single word, disability, covers so many notions, it’s not surprising we struggle to find accuracy - let alone alignment or agreement.  Words fail when it comes to nuance: label, diagnosis, politics, difference, impairment, network, community - disability has been used willy-nilly and every which way. To define ableism, I have used ortho-toxic, a portemanteau term, to describe the violent ideas and assumptions imposed on the disabled population. It means I don’t have to point a finger - at individuals or groups - people can identify as they wish.  It’s clear it’s not always a reflection within easy reach, many will say they’ve never encountered sexism, for example, others say islamophobia appears the minute they cross their own doorstep. 

It is surprising how many of us can ignore the subject of disability altogether, while others see it as an aspect of human diversity, yet more will recoil in horror or embarrassment… how dare you bring your elephant to the room…  it’s hard to identify, as I explained, you run the risk of being dismissed [see Kafer on testimonial injustice].

Misrepresentation is evident in the textual world, where a noticeable silencing tells us that disabled people are untrustworthy.  Disabled people are not recognised as authors, thereby denied a voice in mainstream debates that impact them negatively. Rarely referred to as writers with authority, creators of knowledge, in documents that largely reinforce their marginalisation instead.

Why would I lie?

This shape of silence is hard to describe but essential to describe the framing of d/Disabled authors in text. Selective editing of 1st hand experience, giving a framed story with a medicalised view of the person as the problem. Denying the systemic, institutional and social violence reminiscent of #MeToo and #BLM campaigns. It seems the paid-pen exercises its privilege, not exclusively held by white, professional men, but under a more omnipresent cis/white/elitist gaze. Resistance is far harder for the pens held by those not fighting racism, classism, sexism, homophobia, religious intolerance or prejudice linked to partner and family choice. The 9 protected characteristics should be equitable categories, but cumulative impact is rarely articulated in guidance. If disability is mentioned on reference lists, details are shed, and divergent voices are erased, as unconsciously layers become shorter to save wordage in the final draft. Where disability may be ninth in a list in the introduction, sometimes mentioned in the review, it then disappears in discussion… as for the reference section watch the tumbleweed.  Of course, disabled writers may not identify for fear of having their texts judged harshly, and many write from 1st experience rather than with activism or accountability to other disciplines and professional journals. Disability in title rarely translates to existing knowledge, or knowers in the narrative. Assumptions and bias obvious in the individualising, personalising, uniqueness of condition or individual. This writes away the dimensions of institutional and systemic discrimination and societal disadvantage.

The impact of silencing is apparent where assumptions become myths reinforcing the stereotypes that themselves grow from ignorance - not experience or research evidence. The belief that a mere few need consideration, therefore the problem can be attributed to the unlucky or the undeserving. The omission in disciplinary and professional texts, forgotten in the granular, or believed to be the problem [cost] of another department, profession, or institution. The idea that there’s a line to be drawn between those who can and those who cannot fit into the system; the rules imposed keeping some watching from afar and others further yet beyond the walls. Finally, the dehumanising of those then viewed as public property; from research to the pool-side, experience is used, revised or demanded as it is considered both cheap and devoid of typical privacy - no consent or care required in the probing.

Accountability, or rather the legitimacy gap that is articulated here, denotes a breakdown of trust where reputation lacks any acknowledgement to the disabled population, disability equality or the interests of the disabled people’s movement [D/deaf and Disabled People’s Organisations].  Where legitimacy theory can be defined as the ability to respond to civil groups it will need to demonstrate an intent to address their interests fully in organisational accounts - and society’s storytelling. 

As Oswick et al. put forward, a radical travelling theory is one that moves beyond its own domain of production to be adopted by existing ones with equal measure. A theory that adopts anti-ableism in its intent, therefore, needs broad applicability [Social Model]; so that it can effectively begin ‘a process of repackaging, refining, and repositioning a discourse (or text) that circulates in a particular community for consumption within another community’ (2011, p. 323).

From the sadness at birth, testing for school, a poor practice that stigmatises, barriers, denigration and rejection in the workplace, made victims by justice and barred entry to transport, housing and leisure, the reduction of the human rights agenda applied to disabled people is reduced to care and cure, and adds massive cost to society. Plus, there's no price on the emotional burden imposed on many!

Trust me!

Just ‘any effort’ isn’t sufficient, the imperative behind practice needs to be with the right effort and have deliberate intentionality. While good, best and proactive practice sometimes equates, addressing ableism doesn’t happen by accident while chasing efficiency. Because being better at treating people fairly means recognising an agenda broader than financial value. Divisible or conditional human rights is a nonsense! Cutting down on worth and values, will not achieve more equitable culture(s). Practice will need to change to avoid the very activity that compounds the structural discrimination and the impact of inequality experienced by so many.  Addressing ableism is like tapping your head while rubbing your tummy, different actions are required at individual, team and organisational levels. 

 

 

Bibliography

Aikaterini Malli, M., Sams, L., Forrest, R., Murphy, G., & Henwood, M. (2018). Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature. Disabiity & Society, 1412-1435 .

Anderson, T. (2017). Telling the story of disability. Retrieved 11 10, 2018, from Washington state university libraries: https://research.wsulibs.wsu.edu/xmlui/handle/2376/12238

Beauchamp-Pryor, K. (2012, 6 20). From absent to active voices: securing disability equality within higher education. International Journal of Inclusive Education, 16(3), 283-295.

Beresford, P. (2003). It's our lives, A short theory of Knowledge, Distance and Experience. London: Citizen Press / Shaping our lives.

Campbell, J., & Gillespie-Sells, K. (1991). Disability Equality Training: a trainers guide. London: CCETSW.

Chapman , L. M. (2013). A Different Perspective on Inclusive Practice Respectful Language . Huddersfield: EQTraining Publishing .

Chapman, L. M. (2016, feb 26). The words that bind us . Retrieved Aug 12, 2017, from The Language Of Respect : http://languageofrespect.blogspot.co.uk/2016/02/the-words-that-bind-us.html

Crow, L. (2014, 8 28). Scroungers and Superhumans: Images of Disability from the Summer of 2012: A Visual Inquiry. Journal of visual culture, 13(2), pp. 168-181.

Disability Rights UK. (2012). The Equality Act and disabled people. Retrieved 11 13, 2019, from Disability Rights UK: https://www.disabilityrightsuk.org/equality-act-and-disabled-people

Dolmage, J. T. (2017). Academic Ableism: Disability and Higher Education. San Francisco: University of Michigan Press.

Ellis, K., & Kent, M. (2016). Disability and Social Media: Global Perspectives [Kindle Edition]. abingdon: Routledge.

Equality and Human Rights Commission. (2016). Crime and disabled people: Measures of disability-related harassment 2016 update. Equality and Human Rights Commission. Equality and Human Rights Commission.

Fenney Salked, D. (2016). Sustainable lifestyles for all? Disability equality, sustainability and the limitations of current UK policy. Disability & Society, 447-464.

Frame Works. (2016). How to Talk About Disability and Human Rights. Frame Works. Washington: Frame Works.

Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford university press.

Fullan, M. (2011). The Moral Imperative Realized. Thousand Oakes: Corwin sage.

Goodley, D. (2012). Disability Studies: An Interdisciplinary Introduction. London: SAGE Publications Ltd.

Hall, A. (2016). Literature and Disability (Literature and Contemporary Thought) [Kindle Edition]. Abingdon: Routledge.

Hawley, K. (2012). Trust: A Very Short Introduction (Very Short Introductions) kindle edition. Ashford: OUP Oxford; 1 edition .

Hughes, B. (2015, Sept 11). Disabled people as counterfeit citizens: the politics of resentment past and present'. Disability and Society, 14.

Hybels, R. C. (2017, 12 13). On Legitimacy, Legitimation, And Organizations: A Critical Review And Integrative Theoretical Model. Academy Of Management Proceedings, 1995(1).

Inclusion London. (2020). Disability hate crime . Retrieved 4 4, 2020, from https://www.inclusionlondon.org.uk/campaigns-and-policy/facts-and-information/hate-crime/

Kafer, A. (2013). Feminist, Queer, Crip. Indiana: Indiana University Press.

McRuer, R. (2006). Crip Theory: Cultural Signs of Queerness and Disability (Cultural Front) [Kindle Edition].New York : New York University Press.

Orton, J. D. (1997). From inductive to iterative grounded theory: Zipping the gap between process theory and process data . Scandinavian Journal of Management, 13(4), 419-438.

Oswick, C., Fleming, P., & Hanlon, G. (2011). From borrowing to blending: rethinking the processes of organizational theory building . Academy of Management Review, 318–337.

Papworth Trust. (2018, 5 5). Papworth Trust's Disability in the UK: Facts and Figures 2018. Retrieved 8 16, 2018, from Papworth Trust: https://www.actionduchenne.org/news/papworth-trusts-disability-in-the-uk-facts-and-figures-2018

Pennycock, A. (2010). Language as a Local Practice . Abingdon: Routledge.

Perry, D. M. (2016, 2 25). How “Inspiration Porn” Reporting Objectifies People With Disabilities. Retrieved 11 11, 2018, from Medium: https://medium.com/the-establishment/how-inspiration-porn-reporting-objectifies-people-with-disabilities-db30023e3d2b

Qa Research. (2017). ‘It’s broken her’ – Assessments for disability bene ts and mental health 3. Rethink Mental Illness. Rethink Mental Illness.

Sergiovanni, T. (1985). Landscapes, mindscapes, and reflective practice in supervision. Journal of curculum and seprevision, No 1.5-17 5.

Slorach, R. (2015). A Very Capitalist Condition: A History and Politics of Disability. London: Bloomsbury.

Smith, D. (2016). Disability in the United Kingdom. Papworth trust. Cambridge: Papworth trust.

Sommers, J. (2017, 8 22). Disabled People's Right To An Independent Life Being Eroded By Cuts, Equalities Commission Warns . Retrieved 11 29, 2017, from Huffington Post: http://m.huffpost.com/uk/entry/uk_599c473ce4b06a788a2bef3

 

Trust

Shattered!

I remember years ago working for the Work Foundation, on the Commissioner’s Leadership Programme. I was listening to the gentleman speaking before me talk about trust. He said that trust once broken, was like a dropped plate, once shattered it was fragile and rarely the same again. This troubled me, I’d like to think that over time trust can be rebuilt, and that conversations within relationships can help us feel safe once more. 

Roll on a few years, another conference, another speaker, and I hear that trust cannot be demanded. "You can’t send a memo on Friday night asking for more trust on Monday morning.” Indeed, I’d have to say that the words ‘trust me’ tend to solicit an opposite reaction in me. It is up there in the red flag department with ‘I’ve worked with someone like you before’ and ‘we’re inclusive’. The most reflective among us will say ‘I trust you’ rather than ‘trust me’ when seeking to establish safety in an exchange.  Invariably it’s not a hiccup, but a big crash when trust breaks down, and things fall apart.

 

 

I have been accused by DM of hating men and non-disabled people. Both are untrue as far as I can trust myself, but I do indeed rant against the sexism and ableism I experience. These DMs typically arrive shortly after I have highlighted the fear, pain, and harm caused by ignorance, injustice and disadvantage. More specifically when I’ve called out poor practice. My tone is no doubt angry, as these are situations where I am calling on others to understand the cost of discrimination – the huge emotional labour of fighting for safe space. It’s very easy to say I should trust people to be kind, but without having been able to take it for granted doing so is very difficult. Several times this past year I’ve been treated unfairly. So it’s not that I don’t want to trust the next person, it’s that I did trust the last, and the few before that, and they dropped the plate… they refused to hear what I needed to say to be able to work without fear. Furthermore, in one case I asked for help, reasonable adjustments were agreed but later refused because I was too stupid to understand what inclusion meant. I was left shattered, shamed and humiliated. 

 

So baring scars I’ve asked to be heard, and it’s a game-changer! Starting a new job recently, my now colleague, asked what I needed before work went ahead. After a five minute conversation, we agreed that the difficulties I listed weren’t deal-breakers. I also felt happier, as the probable extra effort to come had been acknowledged. As it happened help wasn’t necessary, but I knew that if problems should occur I would be allowed to speak before they became catastrophic. More importantly, I felt trusted, therefore no longer fearful that I would be penalised for not having voiced my weaknesses.  I took this learning to my next job… 

 

Whether you agree with disability equality is not the key here, it’s whether you can work in ways that express it. Without that commitment, I can’t rely on practice that doesn't counter your organisation’s ableism. Therefore I will continue to find it hard to trust without dialogue. I will need a few minutes to hear in your voice or see in your face, that you understand the position I face. Because, without you acknowledging my fears, you will not able to address them.

 

The point of this bletther is to move away from woe-me. I understand that the current circumstances have put pressure on us all. But I’ve been left ashamed and shattered far more than once this year!  To trust again will require dialogue. I am no more vulnerable than anyone else, but fragile I am, from repeatedly being shut down when I needed my fears heard. Fears that have grown over the years, ignored or dismissed, so that now the tiniest of pressures can make me crack. The fissures may not be of your making, but as my new colleagues have shown trust can be rekindled. Thank you Lucy and Kevin for always asking!  

Ableism ?!

The word ‘ableism’ has gained much currency these past few years. I have noticed the hashtag increasingly being used by the disabled community across social media. Yet, it has no doubt remained a mystery to many. But for Disabled people, the activists among us, it has become hugely significant, as it represents a parity to sexism, classism, homophobia, racism, religious intolerance… words used daily to denote the organisational, institutional and structural injustice many individuals from marginalised groups face.

 

A working definition:

Without a definition, there is no way of identifying the characteristic discrimination imposed on disabled people. If we don't speak about ableism, it doesn't exist, because it is not something we give time to - or that we acknowledge. I work to two definitions based on what I’ve read:

Ableism: a specific type of oppression, akin to homophobia, racism, classism, ageism, and sexism, held in the culture and language that inform society’s debates.

Anti-ableist: a defined position against ableism, the characteristic oppression that disabled people face - as in feminist or anti-racist.  Theorising, for example, with an anti-ableist legitimacy involves explicit reference to disabled people as tellers in a storytelling that holds their interests at their heart.

 

I work as an anti-ableist, which means in seek in my practice, and my writing, to articulate an opposition to the ableism in the world around me. Notwithstanding the experience of individuals, and while allowing them choices of identity, I act to disrupt the institutional and societal narratives that perpetuate ableism. Disabled authors have gone to great efforts to define their experience, by doing so they encourage us to focus on the injustice they face.  Moving beyond issues of identity is critical, because while the predicament of impairment or difference and personal prejudice is significant, but it does not go far enough to explain the startling figures that characterise the inequality the disabled population face. Yet it is an inequality many cannot put a word to, despite its toxicity and omnipresence, the storytelling that surrounds us is ableist.

 

In the same way that critical race theory has given us a language to articulate the structural racism people face, critical disability theory has led to a growing terminology for the societal discrimination imposed on disabled people as a marginalised group. As a specific, insidiously hidden discrimination, ableism has a unique character. The idea that disability sits on a continuum at the opposite end to ability is to misunderstand the meaning of the marginalisation imposed on disabled individuals. If there is an opposite, it isn’t perfection, skill or ability, but a lack of privilege - the possibility of living without being viewed as a problem. It is the notion of ‘able’ as the norm that defines the unearned privilege afforded to those who do not need to answer questions about their difference. Beyond individual experience, ableism is held in conversations at group, department, organisational, local and national levels. Each holds a distinct way of silencing, or distorting, the voice of disabled people by denying their experience, domesticating their ideas, appropriating their knowledge or refusing to theorise by including divergent ideas.

 

It is not so much that people go out of their way to speak badly of disabled individuals, it is more so that we’ve become accustomed to believing the tales we hear about them. Therefore, disabled authors are less frequently referred to as trusted and truthful storytellers. More often found in specialist literature, their accounts are often absent from organisational, institutional and public debates. Furthermore, in the media, disabled people are often described as saints and sinners that laud or vilify their individual stories. It is in the globe-local storytelling that the voice of disabled people is erased. Furthermore, we’ve forgotten to question why. When written into guidance, policy and strategy, the assumptions derived from the saint/sinner stereotype become apparent, not as a caricature so much as forgotten altogether. That’s to say most will forget to think of disabled people as a sizeable population entitled to parity rather than the isolated individual needing to get off their backside – because the saints are doing it so valiantly. Ableism is not written into organisational accounts, however, documents such as audits, reviews, external communications, and annual reports generally fail to name the negative impact of the business on the disabled population. Thus textual worlds fail to articulate an opposition to the institutional disablism within a sector or the ableism in society more widely. Therefore, failing to acknowledge the contribution to human rights erosion imposed by growing inequality, and the lack of measures to gauge it, while attention is focused on what makes money.

A cycle of misrepresentation 

How does a gap in legitimacy grow between organisational accounts and the voice of D/deaf and Disabled People’s Organisations?  Why is there an absence of measures calculating prejudice, disablism and ableism? A lack of response-ability towards the disabled population. 

A vicious circle: 

 

As the diagram above illustrates, a cycle is perpetuated in conversations where the speaker reacts to what they have heard about disabled people [prejudice], rather than question the storytelling that misrepresents them. In the assumption that what the speaker has read or heard is correct, many will repeat largely exaggerated ideas, rather than stand against the ableism within the account. In society's storytelling, where the voices of disabled people are missing, their interests are often replaced by problems based on assumption -  rather than disabled people's experience or research evidence. In turn, these unchallenged beliefs left unquestioned drive negative attitudes. In this cycle, ableism often goes unnoticed, hidden in words, phrasing or sayings that seem innocuous but no doubt harm. This harm will be reacted to more or less subconsciously, with feelings and reactions in individuals who may also internalise ideas about themselves - the stereotypes. 

   

Often the gap between what we believe and what we think is so great, that it is hard to think ourselves out of a stereotypes by changing the words use or the actions we take.  

How do we interrupt this cycle?

Each arrow calls us to stop and think in order to change things in different ways.

 

Spot the stereotype: there’s no easy solution, foremost we need to be willing to learn from disabled individual's experience, knowledge and professional wisdom. That's disabled authors as storytellers: activists, professionals, academics, and D/deaf and Disabled People’s Organisations. Personal accounts will vary, and no disabled individual owes another a story. There are forests of information [books, websites, videos, podcasts…] take it steady. I suggest short introductory texts, preferably with a degree of rigour, based on evidence, because while unique perspectives can be made to fit a dominant narrative [ableist], getting the framing right alters the narrative.

 

Challenge assumption: Reflection isn’t easy, but time taken to think about immediate re-action, to determine why we act / think certain ways, may interrupt a bias we aren’t aware of.  The pervasive, often innocuous, nature of stereotypes in our conversations and across media, means there is lots to unlearn…. Literally unthinking the unthinkable is a job in itself. Disabled or not we owe it to those around us to figure out the lies and the myths that perpetuate negative ideas in storytelling. 

Consider the tellers: try to understand stories from an alternative perspective, placing disabled authors as the pen-holders. In most everyday conversation, the tales we tell, the unchallenged storytelling, erases the experience, knowledge and wisdom of disabled people. Sometimes in ways even they cannot put into words. The more you hear you’re rubbish, worthless, weak, wrong, pitiable… the more you believe it. The more you feel rejected, the more you fight or give up. No two disabled individuals will have the same feelings. [heavens, my feelings change every hour on the hour]. I’m always grateful when people interrupt my learned thinking. 

 

Understand communication: behaviour that confounds you may indeed be a challenge to be more empathetic. Are disabled people responsible for stereotypes, or have we led them to act in response to a single choice between saint or sinner?  No one can answer this without first trying to understand the internalised ableism may lead individuals to do things that mistily those around them. Hushing the voice that says you’re rubbish, work harder, prove ‘em wrong, show strength, hide vulnerability, is not only difficult but hugely exhausting. 

Be disability specific – anti-ablism 

D/deaf and Disabled People’s Organisations present an authentic source of the population’s interests in a way that unites a multitude of voices on a joint vision. Activism is a more complex notion than choice of identity and personal experience, as it draws on evidence and knowledge which can also subject to ableism. It certainly is a way of avoiding the problems often attributed to disabled people as a group. 

 

Human rights and movement interests: 

 

 

For professionals willing to address this matter, Disability Equality is a subject area based on disability studies that provides a good entry point. No doubt due to the barriers faced by disabled individuals, and the lack of recognition the Disabled people’s movement receives as an equivalent voice within civil rights groups. There were no words framing ableism until recently, akin to feminism, sexism, homophobia, or white privilege. Despite an era of rising social awareness, the institutional and societal injustice specific to disability had no name, no voice, and little more than a network of grassroot organisations with an oral history.

 

Bibliography

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

Aspie, S. (2018, 8 2). Read ALLFIE campaigner Simone’s “barnstorming” speech to the Global Disability Summit. Retrieved 8 22, 2018, from The Allaince for Inclusive Education: https://www.allfie.org.uk/news/blog/read-allfie-campaigner-simones-barnstorming-speech-global-disability-summit/

Bebbington, J. (2011). Sustainable Development: A Review of the International Development, Business and Accounting Literature. Univ of Aberdeen Acct, Finance & Mgmt Working Paper No. 00-17 .

Brown, & Leigh. (2018). Ableism in academia: where are the disabled and ill academics? Disability & Society, 33(6), 985-989.

Deegan, C., & Unerman, J. (2011). Financial Accounting Theory: European Edition (UK Higher Education Business Accounting). MaidenHead: McGraw-Hill Education.

Equality and Human Rights Commission. (2018). How is the UK performing on disability rights? The UN’s recommendations for the UK. Equality and Human Rights Commission. EHRC.

Equality and Human Rights Commission. (2018). Progress on disability rights in the United Kingdom. Equality and Human Rights Commission, Equality Commission for Northern Ireland, Northern Ireland Human Rights Commission, Scottish Human Rights Commission. Equality and Human Rights Commission,.

Equality and Human Rights Commission. (April 2017). Being disabled in Britain - A journey less equal. Equality and Human Rights Commission. London: Equality and Human Rights Commission.

Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford university press.

Goodley, D. (2014). Dis/ability Studies: Theorising disablism and ableism. London: Routlege.

Kumari Campbell, F. (2009). Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan.

Kumari Campbell, F. (2019, 5). Precision ableism: a studies in ableism approach to developing histories of disability and abledment. The Journal of Theory and Practice, pp. 1-19.

McPhail, K., & Walters, D. (2009). Accounting & Business Ethics. Routledge.

Nind, M., Sheehy, K., & Simmons, K. (2003). Inclusive Education: Learners and Learnng Contexts. London: David Fulton.

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

Slorach, R. (2016). A Very Capitalist Condition: A History and Politics of Disability [Kindle Edition]. London: Bookmarks.

 

 

Neighbours in time!

 Disability and climate change

As a disability specialist, activist and [recovering] academic. My interest in sustainability came about when I observed that disabled people as a group had been excluded from conversations about the planet. As a group of 600+ million people world wide, it seemed we’d been ignored in the first articulation of the Sustainable Development Goals. While this has been rectified, I still question the hierarchical nature of the goals, which implies a subordinate position for a number of specified groups. 

I remember a conversation with my supervisor, in which we pointed out to each other why all the goals affected disabled people disproportionately. We agreed that any failure to address the Sustainable Development Goals priorities impacted on those marginalised by unsustainable growth more severely due to compounding problems linked to structural disadvantage and global inequality. 

The one paper I could find linking disability and climate change at the time (2018) stated that strategic conversation largely failed to consider the voice of disabled individuals and groups backing their interests. For example, the placement of recycling points or failure to organise bin collections often demanded more of those not considered in terms of access. Result: disabled people were doubly disadvantaged by the extra effort and relatively higher cost of making their households more sustainable.

Poverty is a huge factor here, because without recognising the extra effort demanded of disabled people with regard to employment, for instance, the knock-on impact in terms of well-being cannot be measured. That is without adequate income matters of education, housing, transport, health and participation cost more. Without even delving into the private predicament of impairment, being subject to higher demands for lower returns is fact of life for a significant number of disabled individuals. No justice there then!

Returning to climate change specifically, the hierarchy within the Sustainable Development Goals itself, suggests that the disabled population is a subcategory of a subcategory – rather than a central priority. Yet, as research suggests, the disabled population is a global majority! An identifiable population with a shared voice, defined interests, concerns and priorities that is getting louder on the issue of climate change, sustainability and social justice. The number of conversations and texts relating to climate change have mushroomed. However, while disabled academics, professionals and activists have spoken with insight, expertise and wisdom on these matters, few high profile critics have acknowledged this contribution - or the uniqueness of its insight, knowledge and wisdom.  This lack of recognition has been identified as a wider issue of trust. Exemplified by the rejection or marginalisation of a ‘disability’ voice, typically associated with individuals, groups and the Disabled people’s movement as a recognised association within the civil rights movement acting on climate change.

On a personal level I’ve had lots of comments about the straws I need to drink. These comments are neither rare, or benign I feel, but is an example of prejudice, discrimination and ultimately inequality. Good evidence suggests that the average household disposes of more plastic in a week than my 20 straws a year. [yes, I wash them!] On a organisational level I’ve encountered discrimination which has voiced assumptions about my lack of value. From exclusion from meetings to unfair pricing at networks and conferences. This negative view of disabled employees is defended by arguments based on the extra resources and a lack of acknowledgement of effort made. Most startling I feel was the national response to the pandemic, characterised by the DNR’s sent to disabled individuals, the deaths of disabled people in institutions, the lack of priority given in the vaccine roll out and lack of financial support and care given to those shielding. 

The human rights of the disabled population should concern us all, as most of us are touched by disability in some way - if not personally impaired then within our relationships with disabled friends, colleagues and neighbours. In the global-north the likelihood is that most of us face the reality of old age and impairment, therefore, that sustainability needs to be critiqued from a disability perspective in. Furthermore, because disabled people are highlighted as one group of specific interest within policy, but, despite being a protected characteristic under the law, strategic decisions still largely affect disabled people disproportionately unfair. The National Director of the Equality and Human Rights Commission states, disabled people face a social apartheid: “Far from enjoying increased visibility and being able to participate more fully in every aspect of life, there is a risk that disabled people will become more invisible… positive changes are masking increased social isolation for many disabled and older people as Britain’s society and economic life undergoes significant structural changes” (Naysmith, 2015). 

My research examined the issue of lack of language that leads to this cultural toxicity, often under the radar of most, which has negative implications that drives inequality and covers up an institutional refusal to consider disabled people’s human rights.

Hello, is it me you’re looking for

 It was really important to introduce my sister in order to explain the following friendship - and what it taught me about being an ally.

 

When I was 11 Jenny walked into our classroom one September. Until she arrived I’d been the odd kid. Asked to watch most classes, I had largely drifted in a boisterous environment, mostly trying to avoid conflict. As the British kid in a French school, having been the subject of a huge fight by my parents to be admitted, I felt I had to go un-noticed, it was a matter of survival. Because I couldn’t write, teachers largely refused to engage with me. I was asked to sit quietly and watch the others. I played on this enormously, I must have avoided homework for 3 years at least...  

 

Jenny changed all this as my best friend. It was a perfect year, full of cards, pop songs and confidences. As a Canadian she was the first person I’d met who spoke both the languages I did, celebrated Christmas and Easter the way my family did... I think it’s fair to say we secured each other’s belonging in the world. Lunchtimes became a joy, rather than a dread, as we sat and talked, and talked and talked... if only I could remember what was said. The feeling of those happy days though I will never forget. To be understood, to be accepted, to be wanted and loved. [reaches for tissues…]  As the English speaking kids, with a British family, our bonds were tight and life-affirming. I have no doubt our understanding of social justice came from those conversations. We had no words for disability, discrimination or ableism. Bear in mind, at the time, computers were far from personal, search engines hadn’t been invented. It would take me another 20 years to find the Disabled people’s movement and the idea of the Social Model. We certainly did not have the words to distinguish between identity and group. In the late 70s you could not identify it wasn’t an available option, you were labelled according to the most visible impairment, multiple or hidden differences had yet to be invented.

Connection is never that straightforward, the tale is definitely not to be read as disabled kid finds charity in non-disabled friend’s benevolence. From our perspective the gains were mutual, the pleasures shared, the reality one of tangible happiness. We shared a similar, if opposite, connection to our sisters.  Jenny’s sister had Down syndrome. I am in no doubt that this played a huge part, because like my sister, her ability to understand my experience, and my hers, was significant. I now have words and ideas to describe the absence of prejudice that comes of seeing people as individuals without the skew of prejudice. It wasn’t so much that Jenny wanted a disabled friend, more that the difference wasn’t an issue. Our shared experience drew us together, our lack of judgement allowed a mutual respect.  Jenny and I also shared a fight against sexism and xenophobia [anti-Brit]. While it’s a pointless task to want to decide which ism is worse, it’s certainly less damaging to understand them as cumulative! I had no idea at the time how important this understanding would be. Securing, or facilitating the belonging, of another individual defies articulation. Our lunchtime conversations I am sure set some solid foundations for the self-respect and personal pride I would need to survive the trauma in years to come. Personal endurance that would be seriously tested in the following years. As the Adverse Childhood Experiences (ACEs) literature indicates personal relationships I hugely beneficial in how we deal with violence, victimisation. While there’s no insurance against the hate crime directed at individuals from marginalised groups, having people around you does minimise the likelihood of abuse and may help living with the scars – if not recovery. In my experience, being known is a game-changer, on many levels. I do think that our relationship secured a safe space in the world. Our friendship helped us be resilient in the face of pain that has hit since. While BBFs cannot immunise, they aid resilience, as they secure a belief in our likeable nature. So when people treat you badly you know others won’t. I knew Jenny loved me, so I was sure others would too. Our friendship has been a source of strength and hope in the difficult years since. 

 

Allies at work

As this tale seeks to demonstrate, you don’t always need the right words to stand beside others as allies. I would argue that it’s a more straightforward route though. What Jenny gave me isn’t so much of value, but beyond measure, it is simply priceless. Not all friends are allies, there’s a deliberate effort involved in standing against oppression. However, I’d argue that it’s my love for Jenny that made my activism meaningful. In ways I was yet to discover, my intersectional stance, was born out of many relationships similar to ours.

 

Looking back, it seems a matter of high irony that if it had not been for school we wouldn’t have met. That the self-belief I gained from our relationships not only enabled a sense of belonging but set me on a trajectory as an activist. Years later I find myself placing the rights of people like Jenny, and her sister, at the heart of my work every day. Would I have strived to address the characteristic discrimination other marginalised groups face, if it were not for her. Yet, today other mum are fight tooth and claw to get their young people into schools. As rejection often based on the bogus assumption that for the most part disabled people take – but do not give. Education is therefore for those that will contribute, most insidiously it is implied, on economic terms. Denying schools places to disabled youngsters denies the experience that equality and equity can be lived.  Not seen as an idealistic dream, or a goal solely viewed as the most able.  Jenny and I had no idea where we were headed, and I thank every star we had those months. As I read it education needs to equip us for life, not just for work. Schooling as it stands, pandemic aside, is still showing us how to divide and reject. 

 

Yes, we keep in touch, many many letters over many decades. Jenny is an awesome ally, a bond beyond words, in my heart and a message away. I’m glad we both had the sisters we did, without them we’d have struggled to be allies. We have been friends I’m sure but, it’s the closeness to our sisters that defined our ability to see the injustice we faced. It’s this outward facing rage that has fuelled my activism. With every p.s., every X and every O, I thank you mon amie.

 

Writers note: 

Evidence suggests that the way we talk about the disabled population as a group in the public sphere is often subject to misrepresentation. Narratives often lead a storytelling that depicts disability as a individualised and medicalised telling. Trope: brave perky Crip overcomes personal tragedy to inspire us all. It’s hardly surprising if even disabled people end up writing about themselves that way. Ableism runs deep, internalised oppression deeper. Even where we hold the pen, non-disabled publishers hold the power. When I tell  my story in public, I do it quite consciously to counter identified stereotypes imposed on many marginalised groups. In terms of ableism, you’ll notice from others blog posts, I try to counter the prejudice, discrimination and inequality the disabled population face. 

A town called allies ...

Thank you Bennie Kara (@benniekara author of A Little Guide for Teachers: Diversity in Schools) for the wind beneath the sails of this blog. Bennie made me think about allies recently, and her provocation inspired the next few blogs. Thank you sister! 

In a series of blogs, I wanted to explore different relationships, different aspects of being an ally. But I rarely talk/write of private stuff, so a break from convention here, as I wish to introduce you to a wonderful woman. As I wrote in my acknowledgements it takes a whole town to keep a PhD student alive...In times of need allies are the people who’ve been there for me. Sometimes friends, sometimes colleagues, sometimes strangers… together providing a source of strength... For me there’s a fundamentally life affirming quality to these relationships, one that can be expressed in different ways. Here I look in the places close to home... 

 

My sister: thoughtful, incisive, reflective, wise, warm and funny! A bit barmy and whole lot loving. I am always astounded at how our relationship survived against the hate we’ve faced. I’m the oldest, yet rarely the more mature, I turn to her for insight, calm and strength. We shared the path for many years, so on the face of it, we have enjoyed the same privileges. However, it is never that straightforward, and we talk about our place in the world with trepidation - fear almost.  We both have impairments, and while you can see mine you can’t see hers. By her own admission, therefore, she can choose to disclose.  She has watched people reject me on sight. In our own ways we’ve dealt with similar issues, but equally there have been stark differences. I wear the ‘disabled’ badge with pride these days. I’ve spent a large amount of my working life dealing with disability. Despite the complexities, I’ve gained a degree of ease and fluency, when talking about disablism. As I’ve described previously I’m an activist. My sister doesn’t wear the badge, she understands little of the politics, and her expertise lies in a different domain entirely. I still would include her in the population I strive to fight for, because I challenge ableism irrespective on who it lands. My sister argues that because people don’t know, the stigma is not obvious, her difference is not made public issue the way mine has.. We trust each other’s experience, thinking and commitment to social justice. Our conversations will no doubt rumble on... in many ways the conversations we have mirror those many others are having. 

 

When I was very young I overheard a number of people talk to my mum about me, what a shame it was for my sister. I would freeze, confused, and ashamed, for what I wasn’t sure. I hurt. I carried the pain for years. In our 30’s, I sucked up the courage, and actually asked her how difficult my presence was. She squealed with laughter initially, thinking I was joking, then realising the seriousness, and then said; "many people have fucked with our heads and inflicted pain in our lives... YOU’RE NOT ONE OF THEM."  When I think of our relationship I know I’m ok. She’s my greatest ally. She knows the cost I pay to keep up, but will also tell me to get lost if I’m asking for help I don’t need

 

I know plenty of siblings who don’t work on these levels. We have had to. We now sit at a distance. The elephant in the room is far too big. That doesn’t mean she’s not an ally. The understanding of what each face runs deep. We have each other’s back, we delight in our successes, even when we don’t understand them. She has a greater grip on what I face, odd possibly, but I’ve had to move past the pain. She’s an ally, not because she’s an activist, but because she understands some experiences from her position at close quarters. She has watched, acknowledged, listened and understood ableism, although she wouldn't name it such. She’s held a truth about my story that others will never see. The dark moments, the fear, the pain, the recovery (of sorts)... and the heaps of great stuff too. 

 

Now I’m not suggesting that we all treat each other as siblings, because there are other boundaries to consider here too. The private/intimate invasions of disabled people’s lives is now better documented. But for me the lesson here is trust and respect for another’s stories, even, and maybe especially, when they are hard to believe. Particularly when we don’t recognise it as familiar. I apply this idea, by treating colleagues in a familial way, not a familiar one (Helgesen, 2005).  That is, I aim to look at them as equals, rather than within a positioning on a hierarchical tree. It goes further, the gift my sister extends to securing my safety in the world is far from unique. On my travels I have encountered this acceptance by many, the allies I’ve made, have also been siblings. As I know my sister has gone on to secure belonging for many. I can’t even express the joy of being understood - not having to justify, explain, or compensate! Thank you for having my back, as I have yours. I’m going to struggle with the publish button with this one, but praise be to siblings, and those who treat you as kin!! Up the sibshood in every way, and here’s to diverse families! 

 

Next blog, close friends, spite ‘n malice and ‘helllooo’ - ally the sequel.

Don't take my word for it, Jenny has her own perspective.

https://languageofrespect.blogspot.com/2022/01/hello.html