We need to stop apologising.

The other day, I was attending another SEED workshop.  This time, the focus was on disability and social class (we’d already delved deep into race, gender and sexuality), and I was super-keen, as always, to get into the discussion. I felt I had plenty to say on this particular subject, and plenty I hoped to learn from others as well.

Unfortunately, the projection equipment in the training room was faulty. It had been crackling horribly during the previous workshop when we were watching a video, and one of the facilitators had brought her laptop out of the room and given me headphones so I could watch it separately from the rest of the group and avoid the painful noise. But this time, despite reassurances from the managers of the venue that the fault had been fixed, the speakers were crackling violently and excrutiatingly even when there was no audio being played. I couldn’t bear it. I announced that if the noise continued, I would have to leave the workshop altogether.

The only option was to power down the whole system, play videos using the small screen and tiny speakers of the laptop, and for the facilitators to read out presentation slide content, because the slides weren’t large enough for us to see.

And what did I do?

I apologised.

We’d all been given pre-reading on the social model of disability

We’d just watched a video on the social model of disability.

I’m well-versed in the concept of the social model of disability.

And yet, my automatic response to the situation was to apologise. My hypersensitivity to noise apparently meant it was “my fault” that nobody could watch the videos, or see the slides, on the large projection screen.

Other participants responded:

“Don’t be ridiculous!”

“Of course it’s not your fault!”

“Actually, I’m glad you complained anyway, because that noise was awful.”

The remembered trauma of the pain from the noise, and my anxiety over its unpredictability, meant I was rigid, tense, and nervous for the rest of the afternoon, even long after the source of the problem had been tackled. This had been difficult, make no mistake.

And yet still I felt embarrassed.

This kind of thing has got to stop.

These days, I’m far more “autistic” than I ever was. I’m more open in my stimming. I’ve made reference to some of the traits and features of my neurodiversity in some of the classes I teach. Sometimes I use it as a self-deprecating way of bringing levity to my delivery when things are going slightly awry – students really don’t mind a bit of humanity. You can make slip-ups, even when you’re a knowledgeable specialist (it’s far better to acknowledge your slip-ups before resuming your role as the expert – this is far more authentic than pretending you’re infallible when that’s evidently not the case).

Some of my “being more autistic” is because I’m more easily overwhelmed these days because my life is busier and more cognitively demanding than it ever used to be. And it’s true; I do seem to be more sensitive to noise, bright lights, and interruptions than I was a few years back.

But perhaps it’s simply that my self-awareness and acceptance of my autism means I’m more attuned to what bothers me, and less willing to tolerate it.

And yet I still apologise.

I have spent an entire lifetime apologising. And I’ve realised that this is something that isn’t unusual for autistic people, particularly those of us who are women, and who are adult-diagnosed. We’ve spent so long thinking we’re at fault because we didn’t realise that other people had access to an instruction manual we never received.

I apologise for misunderstanding people. I apologise for being rude. I apologise if I don’t understand a joke. I apologise if the lights are too bright, or a noise is bothering me and preventing me from concentrating.  I apologise for wanting a set of instructions in writing. I apologise for wanting a bit of extra help.

And it’s ridiculous.

The fact is, it wasn’t that my autism meant we couldn’t use the projection equipment. The projection equipment was faulty, thus preventing me from engaging with the content being delivered. That wasn’t my fault.

One of the other participants told me about an occasion when she’d been invited to co-present a conference paper with a student of hers. On hearing of the conference location, the student stated that they wouldn’t be able to participate because certain features of the venue put them at risk of an epileptic seizure.

Not being able to present wasn’t this student’s fault. It wasn’t their epilepsy that meant they couldn’t present. The reason they couldn’t take part was down to the lighting, fixtures and fittings of a building that was poorly designed without adequately considering the needs of all its users.

(The very same building, incidentally, tends to give me migraines if I’m in it for too long).

Those of us who are disabled need to stop apologising for being disabled. Because when something is inaccessible to us, it’s not us who are at fault.

Being entrenched in a medical view of disability means endlessly having to evidence one’s deficits, deficiencies, difficulties, and disadvantages. It’s so often the only way we can evidence our need for support, ‘reasonable adjustments’, or even just basic understanding from those around us. But it also means we’re perceived as less. And it means we perceive ourselves as less.

And so we apologise.

But we need to stop.

At the next SEED workshop, the facilitators will bring a portable projector and speakers, and bypass the venue’s equipment altogether.

And this will make it possible for me to participate without extreme discomfort. But it’ll also mean the other participants aren’t subjected to a noise which, whilst not painful for them, is certainly a nuisance, an interruption, and not especially conducive to learning.

Nobody loses out by such an adjustment being made.

Reasonable adjustments are a tip of the iceberg. The world could be built in such a way that no-one would be systematically disadvantaged. But that’s a long way off.

But in the meantime, we need to stop apologising.


[Featured image: heavy-duty grey carpeting in front of a set of clear automatic doors. The carpet (or mat) is covered by metal grating in a ‘striped’ layout. This type of carpeting is one of the pet hates I have of so many commercial, educational, or corporate environments, and makes my eyes go ‘funny’ Every. Bloody. Time.]

Advertisements

Spot the Autistic

Does anybody else ever find themselves playing this game?

I’m always on the lookout.

My daughter loves going to our local museum. For a while we went every weekend: always the same routine of bus–café–museum–park–ice cream (summer only)–bus. Now that my girl is at school, our weekends are more varied. There’s often a birthday party to attend. Sometimes a visit from relatives. And sometimes, I’m just too damned exhausted to take the kids anywhere, and we stay at home doing crafts, reading books, or playing make-believe.

Even so, our ritual visits, and their accompanying set sequence of activities, are still fairly frequently observed.

My daughter’s favourite exhibit is an interactive game where you can use a touchscreen to select body components, traits and features to ‘design a creature’, and then see how well it fares in a particular habitat. And it’s here we often meet children like her, and like me.

As my girl makes up her monster, I have in-depth conversations with primary-age kids about their favourite amphibian. I listen to their enthusiastic explanations of why, for them, cartilaginous fish are superior to mammals, reptiles, birds or insects, or why a certain invertebrate has the best defence mechanism. Sometimes, they attempt to guide my daughter in her creature design choices, giddily and excitedly gesticulating (she always has her own views and ignores what others suggest). I always enjoy these times. As much as I am a mum, I also feel free to be me.

It’s easier to spot the kids. Particularly the boys (they’re not hiding so much).

Adults, less so.

It’s comforting to discover others like you, but the truth is that – offline – I rarely do. Not many who are diagnosed, that is. And yet I often find myself wondering.

Friends’ Facebook posts about overpowering reactions to smells or sounds. The mention of fear of eye contact; dread of small talk. Cute obsessions, lovingly captured via Instagram. Info-dumps. Lists. Oh so many lists.

And whilst I’m skeptical about ‘armchair diagnosis’, I can’t help but do it from time to time when I watch the news, a documentary, a gameshow, or a celebrity interview.

And certainly, I’ve come across people in my work who I’m sure are autistic. Not in my immediate team, but close by. There might something about their movements or mannerisms; awkwardness one moment, fluidity the next. Hardly surprising – academia can be a refuge for many who think differently; who explore and investigate more intensely; who approach things from a different angle; who see what others can’t see.

At times, I wish we had signals. Perhaps not a special handshake (good God, I hate shaking hands), but something. It would be nice to have that subtle yet satisfying mutual recognition of other members of your tribe.

But always, when I think I’ve come across one of my ‘people’, I let my guard down a little. I’m a little freer in my movements, I’ll indulge the other person’s apparent idiosyncrasies without question, and I’ll perhaps be a little more open with my own. You never know.

Maybe they have a diagnosis, but don’t want to disclose. Maybe they don’t even realise.

I’ve grown so used to ‘mirroring’ my neurotypical peers, despite the cognitive, physical and emotional cost of doing so. So when I come across someone who seems a little different, but perhaps a little like me, it can be a relief to just go with the flow, and respond to what seems a far more truthful mirror in front of me.

So many of us are hidden. We hide deliberately, or we unwittingly hide from ourselves. And I wonder, just wonder, what it would be like if the world were more knowledgeable, and more accepting.

Would I still need to be on the lookout?

Or would Spot the Autistic be a far easier game to play?


[Featured image credit: ‘Lookout‘ by Duncan Rawlinson. Featured image shows a coin-operated binocular viewing machine, pointed outwards over some rails towards an area of trees and water. The sky is blue with minimal cloud.]

We can never do enough.

I can never do enough.

I can never be a good enough employee.

I can never work hard enough
I can never be organised enough
I can never teach well enough
Never quite convey my points well enough
I’m never creative enough
Never convincing enough
Authentic enough
Inspiring enough

I can never do enough.

I can never be a good enough mother.

I am never there enough
I can never be a good enough role model
I can never empathise enough
Never keep my voice gentle enough
Never hold my tongue enough
I can never stay patient enough
Calm enough
Kind enough

I can never do enough.

I can never be a good enough wife.

I am never there enough
I can never be strong enough
Never trusting enough
I never listen enough
Never laugh enough.
I never just ‘let things go’ enough

I can never do enough.

I can never be a good enough friend.

I am never there enough
I never call enough
I never send or respond to messages enough
I never think about my friends’ needs enough
I never remember them enough

I can never do enough.

I can never be a good enough activist.

I am never there enough
Never active enough
I can never write well enough
Or often enough
Never speak well enough
I never listen enough
Never understand enough

I can never do enough.

I can never look good enough.

I can never walk gracefully, or confidently, enough
Never do my hair carefully enough
Never dress well enough
Never do my makeup neatly enough
Never keep myself groomed enough
Trimmed enough

I can never do enough.

I can never be a good enough thinker.

I can never read widely enough
Or deeply enough
I can never analyse critically enough
Never pay enough attention to the facts
Never consider other points of view enough
Never compare and contrast enough
Never present my arguments well enough

I can never do enough.

Is it any wonder that I am tired?
Is it any wonder that so many of us are tired?

There is not enough of me to be everything I want to be
There is never enough of any of us for us to be everything we want to be.

Or everything we have the potential to be.

We can never often enough
recognise enough
when we are enough.