"Tart!"

 ‘Tart!’ she shouted

It hadn’t started there, back in the days before internet shopping as we know it, I had bought a bird-feeder from the RSPB. It arrived, and guess what, it was huge. 6 feeding stations measuring a whooping 1.30 m.  A few weeks later my sister, Bex, came to visit... in deep conversation, our attention soon turned to the birds on the feeder. Neither ornithologists or twitchers, we noticed there was a variety of visitors. "Blue tit!” "Great tit" "spadger!!" began to punctuate our conversation. 

"Coal tit!! Bex then cried.

"Are you sure?" I said.

"Of course, look at the colouring, he’s got a black Mohican! … either that or it’s the blue tit changing hats every time he pops into the trees!?”  

Needles say we fell about laughing. Much hilarity ensued, imagining said blue tit in a dressing up box.

Suddenly Bex shouted ”tart!”...  I shot her a questioning look. She pointed to a dunnock sat on the fence. 

She then told me the story of the ornithologist who was the first to identify that female dunnocks were not the passive, shy, submissive partners of the bird world that most male researchers had assumed! Bex is the wiser of us two, a PhD student at the time, she was far more fluent in the gendered bias in storytelling. As she explained it took a woman to change our understanding of the dunnock’s mating rituals amused and challenged my own understanding in equal measure. Bex proceeded to tell me how the female dunnock flirts with potential mates, luring them to copulation, then chasing them away after pecking at their genitals. She then hunts for another mate, only to repeat the process. Quite literally the tart of the bird world. 

We didn’t leave it there! "Look she’s got fishnets on!" came next! Continuing the dressing up box theme, we soon had said dunnock star of her own burlesque show. By this stage, helpless with laughter rolling about on the grass, adding increasingly surreal twists to the plot. The tart didn’t come out of it well.

A few weeks later a book arrived for my birthday. A bird book! I opened it, and with exquisite joy, turned the pages to increasingly loud gwarffs. Bex had painstakingly cut out hats from countless magazines, gluing them with humour on the heads of the birds pictured. My favourite is still the hawk wearing a motorcycle helmet!! 

Last year I sent Bex a ‘for the pun of it’ badge set, and this year I got a card with birds in party hats... the gift just keeps giving.

And yes, there’s a point of methodology here, may I refer you back to the post on storytelling? When a woman, till then denied a voice in a male dominated conversation, observes the world with a different sensitivity the storytelling changes - sometimes radically. 

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

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.

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