28 January 2021

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. 

22 January 2021

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  

19 January 2021

A jar full

I really like BrenĂ© Brown’s idea of a jar as a metaphor for trust (2012). The idea works really well to explain the impact of micro- aggression. The way I read it, trust isn’t an all-or-nothing deal, it very much depends on how much mutual respect has built up preceding a specific event. So for example, if on the whole someone has been particularly thoughtful around me [pretty full jar] I’m far less likely to take an aggression seriously. Equally if I forget to phone, I’d hope most would appreciate the effort I’ve gone to previously to keep in touch. Over time trust grows in relationships, allowing effort shared to find a rhythm in fair exchange. I might do the cleaning more often, if you peg out the washing… I’m happy to do what comes easy or I find less stressful, if in return people do what they find easier while acknowledging effort made.

 



Problems multiply when stereotypes skew expectation and reciprocity. For example, when people assume same effort equals same task. If, like many disabled people I know, energy is a precious commodity, then meeting someone half way is far harder. This will empty the jar over time. Many will no doubt pay this ‘relationship tax’ without much question... My ableism is so well embedded I have sought to add twice as much to the jar in the past…. Unfortunately, I literally can’t do it now, I simply don’t have any jar-stuff to spare. By breakfast I’m struggling to keep going. Most people get this, until they forget. Then aggressions may slip in, but on a full jar little is lost. Bigger harm is done when people don’t think to begin with, assumptions then tend to tumble from lips, in ways that challenge those of us least able to interrupt their impact. Personally, I find people are far more willing to accommodate for physical effort, but more likely to ignore the emotional demands of chronic issues. These can be debilitating, if not draining. 

 

Evidence suggest that the disabled population pay a far higher price than most people think in terms of fitting in. The emotional labour is huge! The energy involved in participation is expected and rarely acknowledged. This means that in order to be part of shared activity, it up to disabled people to pay the cost. This often means ignoring, or playing down, the micro aggressions that – while unintentional – suck the joy out of being together. Most people guess that their experience is the same as others, therefore it’s harm to repeatedly keeping in mind that some may find it challenging or difficult, and very tiring, to be in the room. The storytelling we share rarely highlights the difficulty people face, more often the telling sits with the generosity of host good enough to open the door or respond to positively. Avoiding micro aggressions demands two things, very much like empathy, it’s a double loop. First we need to acknowledged that what doesn’t not upset us, ableism here, may be painful to others. Secondly, in conversation we need to avoid repeating hurtful assumptions without thinking. For example, rather than ‘no way’, ‘you’re joking’ or ‘never happens!’, say ‘yeah, I can imagine living with that is hard’. 

 

 

From the thesis

 

A history of segregation hasn’t helped, than three decades ago disabled people were all but invisible on the streets (Berghs, Atkin, Graham, Hatton, & Thomas, 2017). Disabled people had few personal stories in the public domain, and largely they lived in institutions or behind the closed doors of private homes (Humphries & Gordon, 1992). A recursive loop has seen a shift backwards in public consciousness over the last decade (Goodley, 2014), in a climate where disabled people are subject to daily attacks and the nature of the crisis in its manifestation emerges from far wider vilification (Quarmby, 2011), hate and harassment. Even the most minor omissions and micro-aggressions are poisonous as they add up in a myriad ways to harm those exposed to them daily. These can include physical proximity, denial of gender, infantilisation, ridicule, disregard and banalisation. Easily dismissed by some as caring, teasing or friendly, this is clearly not how non-disabled people are treated according to those with an ableist sensitivity. As bloggers remark, the subtle messages communicated by these careless acts are negative and condescending (Lu, 2016). No doubt the product of bias, they are untypical in ordinary everyday exchanges, they are the very personal end of a more indistinct yet sizeable wedge driving hate crime (Quarmby, 2011). This wedge, when lodged deep in the spleen, is neither recognisable nor understood as the multi-layered juggernaut it is to those who can articulate it. 

 

 

Works Cited

Berghs, M., Atkin, K., Graham, H., Hatton, C., & Thomas, C. (2017, 6 24). Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people. Disability & Society, pp. 945-965.

Brown, B. (2012). Dearing greatly: How the courage to be vulnerable transforms the way we live, love, parent, and lead. London: Pengiun Books Ltd.

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

Humphries, S., & Gordon, P. (1992). Out of Sight; The experience of disability 1900-1950. Plymouth: Channel Four.

Lu, W. (2016, 10). 13 Microaggressions People With Disabilities Face On A Daily Basis. Retrieved 10 22, 2017, from Bustle: https://www.bustle.com/articles/186060-13-microaggressions-people-with-disabilities-face-on-a-daily-basis

Quarmby, K. (2011). Scapegoat [Kindle Edition]. London: Portobello Books Ltd.