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! 

Underpaid - if paid at all

Worth?! An Ongoing Bugbear

 

I've got something I need to get off my chest today. It's an issue that's been bugging me for quite some time now – the unfair judgment of someone's worth based on their disability. Let me paint you a little picture.

 

Imagine this scenario: you've just returned from a lovely holiday, bags unpacked, and you go to toss that first load of laundry in the wash...only to find your washing machine has decided to quit on you. Disaster! With a soggy mess on your hands, you call up a trusted plumber to come and save the day. A few hours later, Mr. P arrives, does his thing, and just like magic, your laundry crisis is averted. Did you stop to question his skills or the fee he charged? Of course not! You took it on faith that this professional had the proper training, years of experience under his tool belt, and the know-how to get the job done right.  

 

Now, let's add a twist – what if Mr. P was disabled? Would you have then started haggling over his fee, assuming he was somehow less qualified for the job? I'd certainly hope not! Yet, this is the kind of nonsense that the disabled population so often face.

 

I remember when I was just starting as a trainer, I was being paid 40% less than my non-disabled colleagues...all because some people didn't see me as "qualified enough." As if the way I moved or spoke somehow negated years of education and real-world experience! Even a decade into my career, clients would expect a discount. It was interesting that having delivered Equality & Diversity, and leadership training to one particular organisation, they asked for a lower price for the disability equality training session. Furthermore, I was asked to give it half the time, and it was abysmally attended.

 

The assumptions don't stop there, either. There's this bizarre notion that just because we have a difference, the only expertise we could possibly have as Disabled people is in disability. It's like assuming someone who wears glasses must be an ophthalmologist! Um, no...just like anyone else, we have a wide range of experience, knowledge and skills. My abilities and interests go far beyond identity or physique! 

Here comes the real stinger! You would be amazed how many people have asked me to work for free! That’s right. Having failed the interview, and faced the ableism of interviewers. “Surely, you don't need to work… I don't believe your CV… you have the wrong skills…” etc. I often get an invitation to do countless hours of volunteering instead. Literally asking me to pay in time, effort and money for own employment. My last volunteer job cost £140, a sum I had to find.

 

On top of being insulting, being treated as worthless is also incredibly painful. How many opportunities have I missed out on simply because someone decided I'd be "better off" sticking to a volunteering or disability-related role? Unfortunately, for many years, I didn't think to question such narrow-minded thinking. I accepted that I should specialise in disability because it was expected of me. Needless say I did eventually get my head around a socially pervasive and complex subject. These days, I know better even if I can fight it. With a master's degree, a PhD, and decades of valuable experience under my belt, at least I know who is undervaluing my worth. I may move, speak, or think a little differently owing to unusual experiences, but that certainly doesn't make me less talented or knowledgeable in the field. At the end of the day, disabled or not, we're all just human beings doing our best.

 

So let's start giving each other a fair shake (it's a gift) shall we? Our quirks don't define our abilities, the lines aren't straight on human development. I'd trust myself or any other disabled person to unclog your metaphorical pipes just as well as the next plumber!

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