How Often Do You Have Sex?

 

Now that I have your attention, let’s talk about narratives: How We Tell Tales

 

Think about narratives—the different types of conversations we have every day. Many of us change tone and wording without thinking. The way we speak changes depending on where we are and who we’re speaking to. You wouldn’t talk to your boss the way you talk to your best friend. You wouldn’t approach a stranger and immediately ask them about their intimate life. And yet, when it comes to disabled people, this social toggling or its sensitivity seems to disappear.

 If asked how often I have sex, I would expect the very close friend to have at least filled my glass a few times!

Public Narratives

 

Pick up a newspaper, and you will notice how journalists shape narratives to guide the reader’s focus. Consider a headline: George, 56, fell in the street because of a pothole. Why mention his age? Unless he is 5¾, George will be unlikely to want you to know his birthdate! Age is personal. A journalist will mention it because it jars—the wrong toggle invites a particular reaction. We identify with George if we're around his age; perhaps we’ll feel sympathy, concern, or a reminder of our own vulnerabilities. Journalism is about framing, about making certain details stand out while others fade into the background.

 

Similarly, if a journalist writes about sex in a professional context—say, a dentist having a relationship with a client—it’s because they hope their readers find it surprising. The narrative assumes that the mix of workplace culture and intimacy is unusual. In this case, there’s nothing to report. What dentists do in private is personal, as long as everyone consents. (Jill and John got married and lived happily ever after 🙂)

 

 

Misplaced Focus on Medical Matters

 

Getting the focus wrong—the toggling—often happens, sometimes unwittingly, when disability is written about. While many disabled people see themselves as human, the narratives about them often articulate a faulty, medicalised view. Reading about disability in mainstream literature, you’d be forgiven for thinking that most disabled people constantly need medical help. This framing can make disabled people seem less human, focusing only on their differences, often medical conditions. The narrative subtly shifts; the George headline becomes Autistic Falls in the Road.*

 

This brings me to a recent exchange in the supermarket. As I picked up a lettuce, I never expected to be asked about my condition(s). Not because I’m ashamed, but because it’s personal—jarring. Yet, I was asked what was wrong with me by a stranger. Sadly, it happens too often for me to ignore. Typically, in public, we don’t ask strangers deeply personal questions.

After ten years of study and research, I’m not surprised that disabled people are frequently subjected to intrusive questions: Are you taking medication? What’s your condition? Does your disability allow you to do this? These questions wouldn’t be acceptable to most typical social interactions, so why do they become acceptable when directed at people who appear disabled?

 

Literature and Personal Truths

 

Different literary genres use distinct storytelling methods. Mysteries, for instance, focus on action and facts, leading the reader in a straight line to solve the puzzle. Memoirs, on the other hand, rely on personal truths and emotional details, asking the reader to see the world from the writer’s unique perspective. As Mary Karr puts it in The Art of Memoir: “Truth works a tripwire that permits the book to explode into being.” So why tell tales about disabled people? Needy, lazy, broken, sick...

 

Disabled writers and scholars have pointed out that narratives about disability often follow a script that doesn’t align with their actual lived experiences. The focus tends to be on medical conditions rather than the person as a whole. This mirrors real-life interactions, where people feel comfortable asking disabled individuals personal questions of a clinical nature they wouldn’t ask anyone else   (Medical Model )

 

It’s not the same, but the equivalent of walking up to a stranger and asking, How often do you have sex?

 

So, the next time you meet someone, think about how you frame your questions. Do they reflect genuine curiosity about the person? Cats, curry, chardonnay? Or are they shaped by a narrative you’ve not challenged? Let’s move beyond the jarring stereotypes and towards conversations that recognise all people as complex individuals.

*totally disrespectful I'll agree! 

Breaking The Bias

With huge thanks to Emma, and the University of Birmingham alumni team [@BBSalumniUoB]!! Let’s break the bias together! 

Mind the box

Our minds need to deal with a huge amount of information on a daily basis, so it’s unsurprising that we tend to lump stuff together. The boxes we shove information into, the stereotyping, isn’t the problem! What creates bias is the lack of thought we give to this boxing and its impact on our feelings and the difficulty we have in retrieving stuff. We rarely question, for example, whether it was put away correctly in the first place. Our boxing system is neither nuanced nor sensitive, it does not matter whether ideas are good, bad, right or wrong, in they go largely unquestioned. It seems volume matters more than accuracy, if what we hear is loud enough, and what we see is noticeable enough, we lob it in. If we hear sexist, homophobic, and racist comments they end up in a box. We have boxes full of ‘em.  Indeed, confirmation bias will see us actively adding conspicuous anomalies to our boxes, rather than looking out for the positive contributions individuals and groups make to the world around us.

 

When we think too fast, we react to the box, rather than take time to reflect on what is inside it - what we’ve seen, heard or read. Our judgements are skewed when based on what is assumed, our reaction likely to be in tune with what we feel – not at odds with what we think, had we taken time to question these feelings.  

At the crossroads on Women’s Day

As a disabled woman, I can speak on how ableism and ableism intersect. I used to be quite baffled by how emphatically some have rejected my experience over the decades.

A colleague once asked for my address, when I got to West Yorkshire… "no" they said … I looked at them somewhat confused. A stream of justifications followed, explaining why they had assumed that ‘West’ was not a region and why they felt I was wrong. I had to remind them it was my address, therefore I was most likely to know if it was correct or not. It was an uncomfortable moment for us both but illustrates quite clearly how unconscious bias works to confirm prejudice. A prejudice that ordinarily was absent in the appreciation of my contribution until that moment of inattention. Prejudiced was the assumption, in the split-second reaction, influencing my colleague's choice between my truth and theirs [here mine was rejected, but maybe I would have accepted theirs had I not been so certain of my own address - positive prejudice].

 

I’ve experienced this sort of thing many times, and the more I notice it the more it infuriates me. While I understand how bias happens, it’s no less painful to hear someone not believing you. Furthermore, BECAUSE it’s unconscious, I am likely to rattle someone’s certainty when opposing their feelings. They may feel they are right, but would possibly agree that the ideas they hold may be wrong. So it is of little help to point out the reaction, without the stereotype it is based on - the stories that are rarely questioned. Which makes the bias, or unchallenged assumption, especially difficult to stop. Because engaging in the stereotypes, lurking in everyday myths, demands a willingness to become aware of how prejudice works, and the lack of awareness that drives it. How seemingly unremarkable ideas lead us to have beliefs that we do not articulate.

 

Language and culture 

Our language and our culture create our world, what we say and what we see, is the fabric on which we weave our own story. Language matters because what gets the most airtime becomes the most trusted story - in the bigger storytelling. The shortcuts we take, for example in office or technical terminology, often reinforce either negative or positive ideas, particularly where wording does not help convey the complexity beyond our focus. Largely we stop questioning the assumptions we encounter daily when we hear the same story time and time again. If an idea is at odds with our experience [West Yorkshire] it will be dismissed, in time the exceptional is ignored and alternative views may disappear from the conversation altogether. When stressed, embarrassed, tired, or pushed for time, we rely more on feeling. It is then that we are less able to hear alternative views. Sadly our feelings aren’t critical or nuanced, we are far more likely to react to the box than think about what’s in it. Unless we're careful, we stop questioning the dominant narrative: the sexism, racism, homophobia, classism, religious intolerance, and the rejection of family or personal choice, because it's just too unremarkable being around us every day.

 

Unfortunately, when the ideas about a group of people are largely negative, our thoughts and actions may alter. For example, if we hear often enough that widget makers are cranky, we might approach them with trepidation- without even realising why we’re acting differently.  To unlearn bias we will need to identify very mindfully that the assumption - cranky - is worth questioning to then think quite deliberately about its veracity. Are the widget makers I’ve met cranky? Is it likely that ALL widget makers are equally cranky? Is it more likely that among widget makers some may be cranky but on the whole no more than any other group? In addition, overall there are more differences between widget makers than those not making widgets. Have widget makers had bad press over the years? Could their actions also be a reaction to this bad PR!?

 

Questioning the assumption

The bias, regarding sexism and ableism, comes from what we’ve seen and heard about disabled women over the years. Silence, or negative ideas, may have led to a list of unarticulated beliefs that sway our judgment, and while the ideas we boxed unquestionably may seem incongruous when exposed, it’s likely we react to them without thinking. Gladwell suggests we react so fast, in the blink of an eye, that our excuse is built on reaction rather than the assumption. the bias, then, is reinforced by thinking, rather than the idea exposed for myth. In this cycle, while evidence may be ignored, experience sits at odds with wider understanding becoming less important than our experience.  

 

While we ignore the impact of stereotypes on our actions, we’ll also unwittingly seek to confirm our bias, by not noticing the negative implications of our poor practice. Those in receipt of prejudice tend to react, rather than flourish, in an internal struggle against the discrimination they encounter. Energy directed in defence will be unavailable for advance. 

Breaking good

 Being nice does not break bias, particularly when it reinforces an otherwise unarticulated belief that some women are needy or deserving of pity. Exposing the myths is more important, a good spring clean of what we've boxed. Disabled women are no needier or wanting of pity. Exposing the negative ideas, those we see all too often when we search for them, and encourages us to identify the sexist/ablist assumptions behind so many storylines. Courageous, vile, uneducated, stupid, unfeeling - the many characterisations of cranky - imposed on groups and individuals.  

Breaking bias calls on us to replace complacency with action. To notice the assumptions, if not in the moment, soon after it! By asking "why did I feel I had to question and correct Joanna Jones?"  Reflection in action may be better still "before I interrupt Joanna, I better trust Ms Jones, and stop myself from interrupting or correcting her". Better still is to look for the harmful impact of many assumptions, hold them up for scrutiny, and think about the unintended consequences of what we say.  Thinking about Joanna Jones’s experience having to negotiate sexism and ableism, and understanding her success in breaking expectations- an achievement that needs to be evident. Most probably proof of her tenacity - not a fancy tale about her failure.

 

Reflection for action [rather than -in or -on action]  in its pre-emptive nature may be the best solution to breaking the bias. Not a quick fix, given the amount of homework needed to explore the alternatives, but certainly a route to shedding a light on the negative attitudes we are led by when we are not full of care. As we are called to think slow, rather than quick, let’s be willing to take a little time for the effort to appreciate the strength and knowledge in others with the sensitivity we owe them.

 

 

Bibliography

Agar, M. (1994). Language Shock: Understanding the Culture of Conversation. New York: Harper Collins.

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

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.

Bryant, Watson, & Philo. (2011). Bad News for Disabled People: How the newspapers are reporting disability. University of Glasgow, Inclusion London. Glasgow: Strathclyde Centre for Disability Research and Glasgow Media Uni.

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.

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

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.

Deal, M. (2007). Aversive disablism: subtle prejudice toward disabled people. Disability & Society, 22(1).

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

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

Kahneman, D. (2011). Thinking, Fast and Slow. London: Penguin.

Shohamy, E. (2006). Language Policy: Hidden agendas and new approaches. Abingdon: Routledge.

 

 

 

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.

Thank you Ashton Sixth Form College FD Students

Here’s the post that served me as a crib sheet:

Dear learners 

Thank you Ashton Sixth Form College for welcoming me to your community of learning. I was delighted to meet you and answer your questions about my handbook: A Different Perspective On Respectful Language.

 

Q: You describe inclusive practice as a leadership activity, with this in mind do you believe that all schools can offer complete inclusion 100% of the time due to the differing needs of pupils, resources, staffing and training? 

A: I believe that inclusion as a term cons us into thinking there is an option that is currently unavailable. Given variations in practice, contradictory aims, and competing strategies across schools, it seems that no space at the moment is without the sexism, racism, homophobia, religious intolerance, classism, ageism… that threatens the belonging for many. Therefore, as individuals from marginalised groups cannot trust a safe choice, inclusion is no option. Inclusion is probably safer as a vision, a direction or a north star to follow.  

When people say they do inclusion it’s a red flag to me, it so often means there has been little thought about those beyond the walls, and those most marginalised by organisational culture.

Short answer: no!

 

Q: What made you so passionate about equality and inclusive practice? 

 A: Being denied participation in primary schools, being bullied in secondary school, and being abused at college, certainly lit a fire in me to right the wrongs I’d experienced. Evidence suggest education currently does more to divide and deepen inequality. For too many belonging demands more than is possible in terms of fitting in, and for a few education is not a safe space. As for segregated provision, for individuals it is still where there is the highest probability of bullying and harm.

 

Q: Was it your experience in a teaching role?

 A: In many ways becoming a facilitator gave me a voice. Not an expert’s privilege, or an authoritarian highhandedness, but a more equal say in community conversation.

 

Q: Did you face any major barriers to inclusive practice in your role?

 A: Many, but the most painful was the look in some people’s eyes that education was wasted. The belief I would never work. In very real terms I was repeatedly told I’d come to nothing, and was therefore a waste of time and energy. 44 years on I’m ‘Dr Chapman’. However, the barriers have been huge, the cost disproportionately high and the effort was enormous. For me, but also  for my family and my friends. My sister completed in 8 years a journey that took me 20.

 

Q: Do you believe that all children with additional needs or disabilities should attend mainstream schools/settings? 

 A: May I refer you to the first question, it is a difficult and nuanced discussion. Carers and disabled children face an impossible choice. As it stands I don’t think we can safely send any disabled learner to their local school without risk. Variation is such that while inclusive practice is widespread, not every difference is accommodated, embraced, encouraged everywhere. The options we do have tend to fall into different ways of mainstreaming, that's on a vague continuum between segregation and integration, both allowing us the idea of a the non-learner. There are wider questions about education, as distinguished from schooling, that need addressing. We still ask who fits, rather than does the institution serve purpose? ‘Should’ is also problematic here, who chooses who’s in or who’s out? 

As my friend and colleague Kay Sidebottom says with such heart: who gets to define culture? What the rules are? Who must conform and who is rejected?

 

Q: Do you think it depends on the individual needs and abilities of each child? 

 A: EVERYONE CAN LEARN, EVERY CHILD HAS A RIGHT TO EDUCATION. As a global family we are failing to uphold the fundamental human right to education.

 

Q: I work in a primary SEN school in a class of 8 children who are non verbal. We have some children who do not have the understanding or any reaction to talking on their level, shouting, humour etc even though we are aware that we have respect for these children how do we know that they know this?

 A: if you had met me 44 years ago, I couldn't walk, hold a pen, make a mark, speak your language … yet I leaned and have proved many assumptions wrong. Having been exposed to the most disempowering prejudice, I’ve had to unthink a lack of aspiration. Would Stephen Hawking have been supported if he’d come to school with the communication needs he had once he succeeded?

 Expect the least dangerous assumption* , if you treat them everyone with empathy, care and consideration, assuming they can’t say but do feel everything as much as anyone then there’s a possibility of least harm. If you assume otherwise the damage could be enormous, painful and last a lifetime.

 

Q: Do you believe that some people can have their personal choices taken away from them to coincide with other people's beliefs, because of 'political correctness' and being afraid of having their own opinions? 

A: Yes indeed, there are many ways individuals, groups, and global populations get silenced. It’s not the words themselves that do most harm or good, but the way they are used. It’s rarely coincidence, most often it is arrogance, ignorance or a combination of both, with which some will value their own experience more than they are open to others. ‘Dominant’ narratives erase the contrasting views and discredit the experiences that are often pushed out of conversation altogether. If you say something unusual, many voices will often speak over you, and silence the experience you are seeking to share. 

Q: If we are identified by our use of language, whether it be individually, or in groups. How can inclusion take place? 

A: As I said earlier, inclusion is not a reality at the moment, see above, we can do better!!

Q: What is positive discrimination? and how can discrimination be positive? 

A: Well there’s a big question. Discrimination is caused by stereotypes, followed by assumption, if the assumption is positive you might end up being rewarded for success without effort – positive. Sadly, if instead people expect failure, it’ll be sought, and therefore more likely. 

If you’re asking whether procedures should be weighted, let’s say to take account of the barriers you’ve already faced, then that is fairer. Unfortunately most of us see our achievement as personal success, rarely factoring in the unearned privilege or the discrimination we’ve overcome, so we are probably not being honest with ourselves in terms of achievement. 

Q: In a situation where professionalism is essential, jargon and specialist language are inevitably going to be used. How can we be professional but include everybody at the same time? 

A: There’s a difference between a conversation within our direct community of practice and one that tries to extend beyond it. Truth: I don’t know! When I write for people I don’t know I try -hard and fail- to write in more everyday language. A bit like chatting over the fence to a neighbour. I use simple words to say deep stuff. The ideas I share might be challenging but there’ll be no depth or nuance in the conversation.  If I’m talking to a colleague, someone who shares an und of equality say, we’ll take shortcuts, acronyms, and terminology that allows us to talk about more complex stuff without having to redefine every 2^nd word.  Judgment of relationship and context is everything. Being mindful, and listening to who you are talking with will help.

Q:  Do you think schools are doing enough to develop the skills of young learners in having open, honest, respectful and empathetic conversations. 

A: Oh boy!! Not while those within them think remembering facts is a mark of intelligence, being silent is a mark of learning, and siting in rows to pass exams matters more than being open, honest, respectful and empathetic… [don’t get me started on politics, power, and wilful neglect]

Q: What would you recommend to a new teacher to support them in initiating and embedding the practice of inclusive language and meaningful conversations amongst young children? 

Know your stuff, by learning more stuff. The more you understand about learning the more you can support it. Find books, videos, YouTube, podcasts. Mistakes are part of trying, it’s fine to screw up, but not to stop learning from mistakes. Put what you are inspired by into practice, learn by developing more understanding, add reflection and adapt, do better. Learners deserve our best effort, not us theirs!! Speak of shared progress, celebrate effort and rejoice in discovery. What would worry me is if we spoke in a decade and you were speaking the same words – and your knowledge and nuance had not grown.

 A decade of conversation is not 10 years of saying the same thing!

 

*Carole Tashie taught me the least dangerous assumption.

Seeing the Charade: Written by Carol Tashie, Susan Shapiro-Bamard,  Zach Rossetti 2006, UK

 

Abridged Bibliography

Bhopal, K. (2018). White privilege the myth of a post-racial society. Bristorl: Policy Press.

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

de Waal, F. (2009). The Age of Empathy, nature’s lessons for a kinder society. London: Harmony Books.

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

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.

West-Burnham, J. (2009). Rethinking Educational Leadership. London: Continuum.

Wheatley, M. J. (2002). Turning to one another, simple conversations to restore hope to the future.San Franciscoq: Berret-Koehler publishers.

 

 

 

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