Are my words safe in your mouth?

 Billy – age 4 “When someone loves you, the way they say your name is different. You just know that your name is safe in their mouth.” 

 

I don’t know who Billy is, but I’m guessing he’s no longer 4. But he nailed it. I hope I can do him justice in the following, that his words are indeed safe in my writing. I was reminded of this quote, while I was polishing my literature review months back, think Forth Rail bridge ...  Then last week I had some work stolen and it’s upset me - possibly more than it should.  I received an email asking me to agree to corrections made to a training handout of mine. It is  a little ridiculous I know! Had I been approached first, I would have shared recent happily. But I was left feeling attacked.  Since then I have had a number of conversations about reference and citation, clearly some people struggle to see the wrong in paraphrasing or copying without mentioning authors’ names.  

 

When I am referencing I am foremost keen to demonstrate the privilege it is to quote someone’s hard work. I take care to articulate their understanding, to pass on their ideas, and to respect their words. I always feel a sense of trepidation. I just hope that my struggle with the written word never makes another’s ideas seem different to what they meant, that their work is safe under my 'pen'. The numbers involved fill me with fear, (678, p. 70), as getting them wrong would suggest carelessness - when in my case it could be ham-fistedness not ill intent. There’s an ocean of difference, I think, between misspelling or interposing numbers and wilfully denying where an idea was found. Who said it, when?

 

Ahmed talks about her library of female writers as a source of strength (Ahmed, 2017). Equally, I refer to a library in my own work. I purposely look for authors who identify, show an understanding of their field or have a perspective/sensitivity aligned to the topics they write about. Black writers, that identify as anti-racist and use a critical race perspective, for example. I do not always agree with every word written, but I’ll try and convey my understanding of the cultural context and the fight for certain ideas at the time of writing. In terms of disability rights, what disabled people fought for in the 1970s will not match today’s struggle, but I would still take care to understand their perspective, rather than dismiss ideas we have been able to build on since. Opposing professional power may seem less radical today than the nuanced conversations about ableism. But the departure from established narratives they have come to inform later was seismic, because it's harder to oppose established ideas that to add to an evolving way of thinking. 

 

Together writers on a topic tell of the development of an emerging story, not the right or wrong of any point within its storytelling.  Like Ahmed I find power in being able to refer to members of a tribe, my gang, particularly when trying to articulate where I found strength in shared direction. Over the years, reading the work of others, has been about adding depth and breadth to my own knowledge. So referencing comes with high degrees of care, I am mindful that the writers I quote have no doubt spent days choosing one word rather than another. I do not wish to paraphrase, or missquote, writing out of context in a way that would alter meaning. I’ve come across this, thankfully rarely- it stinks!

 

With practice I’ve become more able to think about the possible identity, perspective and  professional context in which writers write. What are they seeking to convey overall, what do they care about, and maybe what they are fighting for or against. The brackets, name, and numbers, are ultimately about celebrating another person’s hard  work. Respecting their vision, feelings and thoughts - motivation and passion that shines through text. Sometimes this means accepting idiosyncrasies that may be at odds with today’s culture, sensitivity and understanding. Yes, as academic conventions dictate, it is about the form, but it's about respect for knowledge and storytelling - a writer’s story with its unique narrative. 

 

More specifically for the researchers among us, the literature review I think has the purpose of setting the pieces of work we draw on in context. No study is going to be the first or last piece of work on the subject. The review is a map of past and present thinkers in your field of investigation. For me it’s been less straightforward that I expected, but I found important in the process was connecting past and present, setting a scene of change.

 

 

Different perspectives on allyship

Recently I have written 5 blogs on allyship, in an effort to articulate, if not define its meaning. I have read a lot, as I understand that I’m possibly not the first to think about this stuff. As ever I’ve explored the work of writers who face marginalisation, trying to side-step those speaking from a position of privilege. As I’ve learned, trying to please people that do not challenge their own privilege is part of the harm. As they not only fail as allies, but tend to hold those marginalised responsible for their own fragility. My responsibility is not to make it easy, because organisational and institutional injustice is huge. My choice is to support learning, in a dialogue that articulates harmful ideas, in order to challenge them.

Allies 1. A town called allies, describes my relationship with my sister. I rarely talk/write of private stuff, so a break from convention as I wished to introduce you to a wonderful woman. On a personal level she has reminded me for years where the problem is, shifting focus from individual to society.

Allies 2. Hello, is it me you’re looking for, is the story of my friendship with Jenny. She remains a powerful and awesome ally. I’m glad we both had the sisters we did, without them we’d have struggled to be the allies we are. Friends play such a critical role in securing a sense of hope, an optimism that good things happen, because they already have.

Allies 3.  I'll always save a room for you!  Professional wisdom is a beautiful thing, especially when applied to working practice and workplace relationships. While not forgetting that identity and activism is hugely important, as they are the first step in acknowledging personal experience, the fight against injustice is also important. Therefore, an outward looking stance, on that faces different oppressions, frees us up to stand beside, not above or in front of, those most disadvantaged by them.  I stand against marginalisation, not because of my experience, but because denying alternative views adds insult to the experience of discrimination and inequality.

Allies 4. Neighbours! In an age of consumerism, there’s a tendency to forget the relationships that are neither familial nor professional. Yet, there is nothing worse than feeling unsafe on the street. From parks, to clubs and churches, the spaces we share are priceless for our well-being. Therefore, being a community ally, is making sure space is not only safe, but absence is noticed.  "You were not there, where were you?"  

Allies 5.  My do-do list, an attempt to respond to the comment "what can I say?!” There’s a tendency for allies to self-promote I feel. However, it’s a slippery path, because what qualifies the role? I often feel pressured into agreeing with people that have declared their allyship, yet seem to not have any understanding of the characteristic oppression I face. If in our relationships as family, friend, colleague, neighbour fail to address what harms the disabled population they are no ally of mine. 

Rather than try to identify which role gives us power, it may be that deciding where to lend our strength is far more critical. I can voice my anger against racism, classism, sexism, homophobia, religious intolerance, to protect family and identity choice, without rejecting any personal experience. However I need to understand what people face to stand against it. I can’t agree without understanding!  

My allyship as sister, friend, colleague and neighbour is in the action I take to minimise  the harm that heads their way. Only they can decide if I’m addressing their interests, or that I’ve acted to make our shared space safer. I can’t call myself an ally, but others may call on it, and hopefully rely on it.

ME in FE - Hayley Seward writes

I’m over the moon to share this space with Hayley this week. I love her insight, knowledge and honesty. Thank you for your wisdom awesome woman! 

Working in further education is by far the most rewarding and enjoyable career I have experienced, I’ve worked on market stalls, in stores, telesales and then for the police for 9 years before making the leap into lifelong learning.

Growing up non-disabled I always took my health for granted and unconsciously never really understood how things could be for those who grew up differently to how I did. Towards the end of my career with the police (working in operational police training) I became unwell and was diagnosed with the Flu, I returned to work before I was fully recovered and subsequently caught acute sinusitis only a short while later, this time I didn’t recover. The malaise, the pain and aches seemed to be a permanent feature and my energy went from being almost constant levels of (annoyingly) hyper to practically nothing, I couldn’t think properly, it was like living through a fog of just wanting to sleep and feeling physically very weak.

My GP’s were excellent, you read a lot of horror stories from people in the same situation where they struggle for years without answers but my story was very different. Three months after my symptoms started I was diagnosed with post-viral fatigue and advised on how to try to manage symptoms and increase energy levels, I was given antibiotics and other medications to try and eliminate anything else that might be lurking, I had blood tests, scans, xray and what I consider to be a very thorough investigation, at 6 months however there was no change and I was referred to Sheffield IAPT services and counselling to learn how to deal with my new life.

The acceptance of what was now my new reality was a difficult adjustment, I was used to mountain biking at least twice a week and maintaining regular fitness to trying my hardest not to fall asleep during the day. I no longer had the energy to do anything other than work and look after my daughter, my social life was a distant memory and I do feel like I went through a period of grief.

My employers at the time weren’t very understanding and it just so happened that I had graduated with my PGCE not long before falling ill, I applied for a position at Chesterfield College and they are simply, Amazing. I was really open about my condition from the date of application and they couldn’t be any more supportive, my new manager contacted Occupational health for advice and put in measures to ensure I wouldn’t become overwhelmed, she regularly met with me to ensure I was ok but otherwise just treated me like a regular member of the team. I have a new role within the college now and my new line managers are just as accommodating, we’ve been listed as a great place to work and I wholeheartedly agree with that accolade.

It’s been four years since my diagnosis and although I’m not at my pre-CFS/ME level of fitness I do have a happy compromise that I work hard to maintain.

What works for me is pacing, one of the hardest lessons I learned was the ‘boom and bust’ cycle. I would get bursts of energy and try and recapture my former life to only be hit with a crash 1-2 days later, feeling worse than I did before. I began pacing (with drs advice) taking short walks daily, even if just for 5-10 minutes and to gradually increase this over time, I also stopped sleeping during the day and began to monitor my diet much more closely. I have good days where I feel I can take over the world and then sometimes I feel like I’ve done 4 nights without sleep at a music festival. I don’t beat myself up about it and I am much happier now.

I made changes in my home life and as a result of managing my energy I also found I began to re-inforce my own boundaries and I have become much more self-respectful and dedicate my time to what is important to me, my family, my students and my passions (not so much the mountain bikes)

Here are my Top tips 

• Mental exhaustion is just as tiring as physical, if someone or something is draining your energy, listen to your body and switch that connection off.

• You are still you, you may have to let go of parts of your identity but you are still you (and you are amazing) 

• Re-invest in yourself, So you can’t mountain bike everyday life you used to? Find another activity that makes you happy.

• Follow your Dr’s advice, we all react to things differently, I find pacing really effective but others don’t.

• Celebrate the small wins, create a Ta-da! List and mark off all of your achievements, not a to-do list.

• You still have your voice, say no when you need to, ‘well meaning’ partners or family members can become smothering with their ‘help’ and if you don’t want to take part in social activities, it’s ok to say no.

• Don’t be afraid of unsympathetic managers, It’s not your fault they don’t ‘get it’ the Action for ME website has great tools for managers of staff with CFS/ME, Occupational health are amazing and ask your GP’s for support if needed, Mine wrote me a letter as proof of diagnosis when I was first experiencing issues at my previous employer.

• No job is worth your health, It’s wonderful to be passionate about your job and you should be, but saying yes to everything you are being asked if it impacts on your health is counterproductive, if you exhaust yourself and crash you could be off work which would have a negative impact on your morale and your role.

• Connect, Having friends and peers who are experiencing the same situation as I am has really helped me to understand my own experience and the wider community, all are welcome to link in with us at Me-in-Fe, join us on twitter @MEinFE1 or by email meinfegroup@gmail.com

D/deaf and Disabled People’s Organisations?

I was contacted by a colleague this morning with a question concerning the use of D/deaf in D/deaf and Disabled People’s Organisations. As you’d imagine the matter is far from straightforward, therefore a simple one-line answer could not do it justice. 

 

This piece

•       is a provocation on the understanding of privilege and puts forward an articulation of disablism

•       frames audism, lookism and the pathologisation of speech impediments as form of ableism 

•       suggests that matters of self-reference to do with association and community are matters of personal choice 

 

I would first like to thank Dr Heather Mole*, as I draw on her work – and our many conversations. She has been an outstanding ally, and any lack of clarity is mine, not hers! As I interpret it, the Deaf community differ from other groups, because their culture is defined by languages, with distinct meaning, therefore the rejection they face is more to do with non-verbal speech than any impairment. As Heather writes: ‘small ‘d’ deaf [is used] to denote audiologically deaf people versus capital ‘D’ Deaf to denote culturally ‘Deaf’ signers. Small ‘d’ deaf people are described solely by their condition of hearing impairment whereas culturally ‘Deaf’ people are considered to be a subgroup of deaf people. Capital ‘D’ Deaf people are those who use sign language and are members of the signed language-using community and also understand ‘Deaf’ culture’ (Heather Mole, 2018, p. 29).

I articulate privilege, relative to non-disabled people, as not having to face disablism. This means I think that an individual doesn’t need identify as a disabled person for me to articulate the characteristic discrimination they are subject to – or the inequality imposed on the disabled population more widely. The way I read it, akin to the sexism women often experience, which is often unarticulated by them, but impacts on them negatively, as a characteristic array of disadvantages. In gender terms, there's a difference between ‘misogyny’ and ‘patriarchy’ in the language of feminism, that writers on matters of disability equality have yet to imagine. Currently there is a dearth disability specific terminology to describe identity, environment, discrimination and inequality.  

 

Disabled people, have an array of choices in terms of identity, groups, networks, associations and community; and therefore huge choice of labels and badges to describe affiliation or belonging.

• We can identify as disabled or Disabled – or not
• We can choose our relationships to groups, networks and / or communities 
• We can disclose impairment, conditions or difference – or not
• We can align to cause: shared problems, concerns or politics – or none

For those of us who identify as Disabled people, the capital ‘D’ typically indicates a choice of activism, community and/or culture. I tend to use ‘d’ or ‘D’ strategically, very much depending on context. If I am asked specifically, I will state my identity as a Disabled, to acknowledge the community, culture and political voice of the Disabled people’s movement. As an author, it is more difficult, I define my criticality as a sensitivity to feminist and disablist language/culture. However, as a writer, I’m not always an author because I tell the story of others [feminism]. Therefore, I hold myself accountable to both the disabled and women’s population by acknowledging Women and Disabled people as activists within the civil rights movement movement more widely. I disrupt storytelling by holding to a penship that is anti-sexist and anti-ableist in its activism. 

 

From the perspective of privilege, ableism often refers to the institutional and societal inequality [or skewed narrative] which is characteristic in stories the disabled population. Privilege, thus, has less to do with a choice of identity, and more to do with the disadvantage imposed from beyond us. So as an individual with impairments I am but one of the many millions affected by ableism and sexism. Ableism is sometimes stated as the power held in conversation that are not dominant, the one acknowledged as mainstream. These globe-local conversations have specific distortions, for example, they speak of disabled people as less human, ignoring their contribution or telling of them as less able (Chapman, 2021).  Returning to the d/Deaf question, as both ally and an activist, I understand that disabled people with hearing loss don't view it as an impairment, yet they no doubt face a forms of ableism. One such form has been referred to as audism: 

Audism has been described and applied in different ways… as “[t]he notion that one is superior based on one’s ability to hear or behave in the manner of one who hears” (Humphries 1977, cited by Heather Mole, 2018, p. 29)

People facing audism may identify as deaf to define their hearing, and/or belonging to Deaf culture to define their language – ‘those who use sign language and are members of the signed language-using community’ [Mole, 2018, p.29]. As individuals within the disabled population the choice of identity is theirs.  Heather also says: “for many deaf (as well as Deaf) people accessing spoken English takes work – either by using technologies and/or lipreading or using communication specialists. So whether profoundly deaf, hard of hearing or BSL users from birth it can be difficult to access spoken English (the dominant language)”.

 

From this perspective, hearing privilege needs articulating in allyship as the characteristic form of ableism imposed on the d/Deaf community. As a person that isn’t hindered by audism, my hearing privilege, I articulate my allyship in the ideas above.  I acknowledged sign language as distinct languages with meanings, equivalent to - not subordinate to - English, French, or Australian.  BSL, AUSLAN and ASL. Sign has communities of language, defined by different meaning  and  culture. I acknowledge many communities with their own culture and sense of identity, based on a shared language. 

 

In the most simplistic terms you could imagine a Venn diagram with ‘Disabled’ deaf and ‘Deaf’, with the Disabled people’s movement as space of overlap in a wider scattering and clustering of identities; unfortunately reality is far more complex, overwhelming and messier [than theory]. I refer to d/Deaf therefore to encompass all choices, because I believe self reference, association and community are personal choices to be acknowledged in order to be respected.

 

At the crossroads 

As I understand intersectionality, many disabled individuals face different characters of discrimination on multiple levels. Some face sexism and racism and ableism. Others face homophobia and ableism and audism. My own privilege, as I state above, isn’t about identifying as French, middle class or white, so much as not facing classism, racism or audism in addition to ableism.  

 

I have come to articulate audism, lookism and prejudice against speech impairment as specific form of ableism. 

 

As I’ve said before, joining in, aligning to, and developing knowledge are different things entirely. I speak of the disabled population as the estimated number of people facing ableism. Disabled people as those identifying as either having an impairment, conditions or difference that means their in receipt of prejudice, discrimination and inequality in society.

 

Grassroots organisations as those supporting the interest of the disabled population whether they identify or not charities, largely impairment specific, mostly concerned with a subsection of the disabled population. For example, people with a defined impairment.

 

I am very much helped by different definitions of community, association and network. Growing literature spells out the difference between them as:

•       community as an association typically defined by space or interest. For example a neighbourhood of a pottery class, where members join on their own terms or with specific activities in mind. 

•       Networks as a more formal group existing with a specific function, aim, problem or interest.

 

* yes we did have a initial conversation that went: “Mole!... Mole? …Mole!! Mole???” 

 

 

Bibliography

Burch, L. (2018). ‘You are a parasite on the productive classes’: online disablist hate speech in austere time. Disability and Society, 33(3), pp. 392-415.

Carastathis, A. (2016). Intersectionality: Origins, Contestations, Horizons (Expanding Frontiers: Interdisciplinary Approaches to Studies of Women, Gender, and Sexuality) [Kindle]. Nebraska: University of Nebraska Press.

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

Michalko, R. (2002). The Difference That Disability Makes [Kindle Edition]. Philadephia: Temple University Press.

Mole, H. (2018). Narratives of power: Critical reflections on signed language interpreting.

Morris, J. (2001). Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights. Hypathia, 16(4), 1-16.

 

 

 

My do-do list!

Years ago when I began delivering training I followed the methods of the day, giving participants lists of do/don’t say words in a session on correct language. Sadly, when doing a piece of research on respectful language, I found out learners felt confused by this. On other awareness training, I have myself been confused by ‘don’t say’ lists which left me fearful of having conversations about racism, classism or homophobia.  In many conversations recently, some non-disabled people have also said to me that they feel they can’t talk about disability because they don’t experience it. I do not experience racism, but I believe I’m part of the problem if I can’t articulate it adequately.

So this is my ‘do-do’ list, an attempt to respond to the comment "what can I say?!”

 

 

 

 

 

·      Do talk about the size of disabled population, stressing vast numbers, huge inequality, lack of visibility and wide variation. This helps contradict the assumption that disabled individuals are few and a separate group to those individuals facing sexism, racism, homophobia, religious intolerance, family and partners choices.

 

·      Do highlight the disadvantage and inequality imposed on disabled people. Articulate identity separately, because respecting choice in no way stops us from talking about discrimination.

 

·      Do make the assumption that to be visible at all most disabled people have no-doubt overcome huge barriers, simply to achieve life goals many others can take for granted. 

 

·      Do refer to D/deaf and Disabled People’s Organisations as the go-to for representation. Individual experience is the first step, but D/deaf and Disabled People’s Organisations offer a shared voice that adds activism and community interests to accountable storytelling.

 

·      Do refer to the societal and environmental aspects of disability discrimination in exactly the same way as you would frame a conversation about anti-racism or anti-sexism.

 

·      Do state clearly that organisational culture, and more broadly society, denies many individuals their human right to belong, which is a cost to communities.

 

·      Do ask about identity, if and when a professional relationship has been established. Disabled individuals will have different words for their experience, knowledge and wisdom on these issues. As do feminists, for example. Allow for this choice and respect personal boundaries. Illness, impairment and difference, contrary to society’s storytelling, are private matters.

 

 

 

Read more - Legitimacy, accountability and human rights 

 

Neighbours!

 Allies 4  

 

♬🎶 Everybody needs good neighbours.
Just a friendly wave each morning,
Helps to make a better day. ♬🎶

Barry Crocker

 

 

I’m finding it hard to write about how frightening shared spaces can be for me. This relates to the last blog because if people were introduced to the notion of being an ally at work, more of us would take this understanding onto the street.

 

I was trying to explain to someone on the street a while ago that I need to park close to home because I cannot walk far. It was her response that felt like a body blow.  "Why live here?’ She asked me.

 

On the face of it, it’s an innocent question. But the assumption beneath it was problematic. As came through later in the conversation, she was asking me why I hadn’t bough a house elsewhere. In ‘disabled people’s land’ I presume. Because, she kept asking why I’d moved into a normal [sic] neighbourhood...

 

“There isn’t a land for disabled folk!” I wanted to shout.  There are no houses with drives, level access, big room, adjustable kitchen counter heights, ground floor bathrooms... at affordable prices, they just are not built!! The idea that there’s a street, or suburb, where ‘you lot’ can live is also reprehensible. Yet it appeared to be an option for this woman. 

 

I have these conversations occasionally, or variations on a theme... unintentional bloops that escape the lips of those unfamiliar, and therefore reliant on ideas that don’t stand up to scrutiny.  I can’t help thinking that our neighbourhoods would be safer for disabled people if those so privileged by them were made to think. It must be wonderful to be able to negotiate a full day with having to worry about parking, access, toilets, bad attitude, rejection, challenges...  Privilege here is not being on the receiving end of a belief that disabled people belong elsewhere. The idea that we should somehow seek permission in shared spaces. To be held apart in groups, networks and communities, by the benevolence of those kind enough to let us in.

 

Being a community ally, is making sure space is not only open, but absence is noticed.  "You were not there, where were you?"  

Had we all received a modicum of disability equality education in our working lives, imagine how much safer our communities would be. Of course making the workplace safe is a priority. But we are born to be human not solely workers surely? Beyond familial relationships there are many connections that are critical to our sense of belonging. 

Our neighbours are wonderful, and mutual support, understanding, and cake are in abundance. But, on our street it’s Kevin’s enthusiastic hello that outshines mine on every occasion, a generosity that states I belong in his world!

 

As some will have noticed, there’s a progression in the last 4 (5) blogs. The sequence matters to me. I’ve moved from a personal, to a friendship, to a professional, to end on a community dialogue with purpose. I wanted to be able to show how our language changes depending on relationships, context, place and space. Not being able to refer to the intimacy within my relationship with my sister, makes it really difficult to point out how boundaries differ in the workplace. As a disabled woman, I look for allies everyday, people able to buffer the ableism and sexism the world sends my way.  In public spaces, I need others to know how to articulate the complexities and nuances the culture that surrounds us. Thankfully many do!! 

 

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  

The arched window: a blended perspective

Please do not take this too seriously, it’s a whimsical footnote… but it got serious despite my best efforts, sorry!

 

The children’s TV programme Playschool was a huge treat when I was a young. We lived in France, so the opportunity to watch it only came around a few weeks every  year. At my grandmother’s I would sit in front of her TV and watch in awed silence. The square, round and arched windows were the highlight of the programme. I loved the short films, and guessing which window would be picked was the best bit of all. As a metaphor, not an analogy, the framing of the windows offers a perspective on storytelling in the following.

 

My thesis dealt with the blending of theory, among other things… That’s the notion that theories in some subjects are borrowed or blended, to be more or less domesticated by other disciplines. Some disciplines it seems adopt theories more readily than others. Some blunt theory by eroding their more challenging ideas, but keeping the ideas that best fit their own existing ones.  So it is with this in mind that I came to reflect on Playschool in this a feminist critique of the social model. I drew on the writings Oliver (1990) and hooks (1989), I hope to honour their storytelling in this piece. Importantly where I fail, it’s my bad!!!

 

The square window 

Imagine the square window as a frame through which society views matters relating to disability. Looking at the paper trail, disability has been the topic of accounts held in journals told largely by clinical professionals and/or academic writers. Their storytelling often speaks to an individualised and medicalised view of the problems disabled people have. No doubt framed by more widely by ideas of war, industrialisation and eugenics. They have have been tales told by the ‘expert’, in a scientific language, assumed class dominance, referring to the rectitude of economic development, the ghost of the industrial revolution, a barely vailed belief in progress and growth as a good for society. As this trail suggests, many research projects sought to answer questions that addressed personal issues to help individuals fit into society. Alongside this effort, communities saw the rise of poorhouses, workhouses and asylums, erected to warehouse those deemed deserving of charity - while not encouraging those viewed as undeserving.  Pay attention to the framing, which helped silence the experience of disabled people in favour of explaining the price of their lives as a cost to society. Rarely even overtly framed as consumers, certainly not as citizens, disabled people were painted as passive recipients. Their voices thus erased from society by a growing industry, yet turned into commodities in a disability industry turning over thousands every year. An exploitation hidden from the frame, by a narrative of charitable benevolence silencing individuals, families and communities. A huge human cost. For me the medical model, is a shorthand, a way of framing clinical ideas have been domesticated by humanities, with a language that sounds authoritative but has few words for what matters to disabled individuals. In my experience evident in the words of those who feel entitled to tell me how I should adapt my story, people who seem oblivious to the frame, and therefore have no understanding of what they are asking me to dismiss. 

 

The round window

The round window, I think of as framing the voices of disabled people. Importantly standing against the medical model. More so against how medical thought has been adopted by disciplines, than whether it is okay in its own place, in a framing that can impose its binary – dividing opinion in far more complex debates. Its shorthand raising the question of the disabled population’s human rights in terms of  “what’s wrong with society”.  For me, and the many disabled people I’ve spoken to, it reminds us to look beyond each individual, to the organisational, institutional and societal structures that perpetuate the disadvantage imposed on the disabled population. It allows us to ask how change could enable greater participation and citizenship.   Looking through the round window, the storytelling starts with the evidence held in disabled people’s storytelling – their experience. These tales often speak of testimonial courage, emotional labour, and the personal cost of boundary negotiation. Accounts that I read as upholding the values of coproduction, as they affirm a wide range of shared interests, from a diverse group,  often engaged together as a community of learning, activism and/or quiet resistance. The round window frames a storytelling that acknowledges a fight against segregation, institutionalisation and marginalisation. Fights for rights with roots in the Independent Living movement, rooted in the interests of the D/deaf and Disabled people’s movement. A demand from a group within the civil rights movement for society to act with greater legitimacy to enable participation, addressing the barriers to community life and inequality globally. More saliently asking questions that failed to be addressed by those gazing through the square window, through the round window is a world vision more congruent with human rights, equality and justice.

 

As a shorthand, my reading of recent disability literature, encourages us not to pick between windows, but to seek to see beyond each one. This, an interpretation of history, was prompted by a textual analysis that suggested that the past framed square, is now facing push back. However, this pushback is not round either, I can’t unpick it fully here, but counter arguments are often framed through existing windows… responding in an academic, clinical, scientific style that in itself presents the wrong framing. Put another way, what may make you better, rarely makes you happy and is unlikely to help prevent illness. Well-being requires a different understanding than cure. 

 

Furthermore, on the street the social model has currency. Outside the university, and its growing consumerist culture, the square frame has changed the lives of many. I’d wager the simplicity and accessibility of the social model has altered the way many disabled people see ourselves. For me it was oral history, not books initially, that provided a way into the ‘us’ of D/deaf and Disabled People’s Organisations storytelling. It wasn’t grand theory, but a way of making sense of being disabled by society and not having to change. And while we can critique the models in many ways, they serve to helps us interrogate many other perspectives we’ve come to accept – sometimes without question - our societal conversations. However, I think it helps when  both frames are considered for their alternative views. As they help us consider many layers of culture, the institutional discrimination and globe-local injustice, the domestication of a voice that silences the disabled population in conversation about rights. 

 

The arched window

Hooks of feminism: “Practically, it is a definition which implies that all sexist thinking and action is the problem, whether those who perpetuate it are female or male, child or adult. It is also broad enough to include an understanding of systemic institutionalized sexism.” (1989) 

 

So the arched window!?! I hear you cry. Can we acknowledge and enable a different view? I’m not suggesting I have an answer, but an have an urge to encourage a blending of disciplines in a more equitable way. Without borrowing or blunting, but honouring the sprit of the more jagged edges?  As Hargraves encourages with regard to sustainability, leadership is a diet not a menu. We cannot pick and choose which tales we accept, or those we reject, according to how they best fit the windows we are most comfortable with. Ideology is at work, we need to begin by questioning the shape of our own frames.

 If dated, the round frame has power outside the university, in its enduring contribution to the lives of many disabled individuals and the allies at their side. It enabled a view that was ground-breaking against the institutionalisation of the day. As such, it is far more understandable as a response to the structural harm of its time. To deny its contribution speaks more to criticism, than the possibility of further critical interpretation. As bell hooks said: “To understand feminism it implies one has to necessarily understand sexism”.   The social model gave me a way to understand ableism, in turn this led me to understand disablement, much later disabled people as storytellers and the frame of their storytelling.  

 

The way I read it, having analysed a small library, extending the story, including the challenging ideas, while striving to give breadth and nuances seem far more respectful when acknowledging past voices – as equal partners in time. Any view on it’s own will most probably fail to illuminate the tightropes of privilege, oppression and societal inequality. As bell hooks encourages us to consider, keeping knowledge within academic walls encourages an acceptance of the ivory towers and its window framing, without the disruption of others. Elitism, I my experience certainly, is a privilege that doesn’t do much to counter an internalised oppression driven by the ableism around me, one also toxic to many. It’s a response to silencing I seek to assuage by more conscientious reflection. By holding an arched window up at our societal conversations maybe we can foreground the round more effectively?  Why? Because changing the conversation without including the people most affected by shared decisions will only serve to keep ‘inclusion’ as conditional. If the frames are ignored it’s impossible to work as allies as our leadership activity will be devoid of accountability, due a gap in legitimacy, where disabled people’s voices need to guide our strategic thinking. To quote bell hooks "Simply put, feminism is a movement to end sexism, sexist exploitation, and oppression"; then similarly addressing ableism is a movement to end harm inflicted on disabled people and the disablism and disablist silencing that goes on around us in an ableism repeated with resulting silencing of the disabled population – if not individuals.

 

Go watch playschool with that in mind, I dare you!!

 

Bibliography

Barnes. (1991). Discrimination: disabled people and the media. . Contact, 45-48.

Hargeaves, A. (2005). Sustainable Leadership. San fransiso: Jossey Bass.

Helgesen, S. (2005). The Web of Inclusion. Washington: Beard Books.

Hochschild, A. (2012). The Managed Heart: Commercialization of Human Feeling. Berkeley: University of California Press.

Holtgraves, T. (2002). Language as Social Action, Social Psychology and Language use. New Jersey: Erlbaum Associates.

hooks, b. (1989). Talking back: Thinking feminist, thinking black. Boston MA: South End Press.

Klein, N. (2014). This Changes Everything: Capitalism vs. the Climate . London: Penguin.

Morris, J. (2001). Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights. Hypathia, 16(4), 1-16.

Oliver, M. (1990). The Politics of Disablement: A Sociological Approach (Critical Texts in Social Work and the Welfare State). London: Palgrave Macmillan.

Oliver, M. (2016). Rewriting history: the case of the Disability Discrimination Act 1995. Disability & Society, 31(7), 966-968.

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