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.]


Seeing ourselves

[Author’s note, 27 September 2017: since writing this post, I’ve come to the conclusion I’m not quite as cis-het as I always assumed I was. But my because my gender identity and sexual/relationship orientations aren’t very easily definable, I don’t really TRY to define them. And the rest of this post still stands – I experience no gender dysphoria, in person I’m generally read as cis-het, and can’t be bothered with the hassle of quibbling about it. I have enough challenges having decided to be so out and proud about being autistic in my late 30s without further complicating matters.]

I’ve recenty embarked on a professional development programme at work, which my (UK) University runs as part of the US-based National SEED (Seeking Educational Equity and Diversity) Project on the Inclusive Curriculum, first developed 30 years ago.

I’m excited and also somewhat apprehensive about participating in this programme, and what it will entail. Certainly it’ll involve a lot of challenging of perceptions, self-scrutiny, and, I’m sure, a hell of a lot of learning. Along with the other participants, I’ll be exploring my own individual diversities and how they intersect, as well as thinking about those of the people around me, the people I work with, my students, and so on. I’m hoping that it’ll be both of use to me as a private individual, and also another valuable source of learning that I can put towards being a better teacher.

A single story

At our first SEED workshop this week just gone, we were shown the video of a TED talk by the novellist Chimamanda Ngozi Adichie, on The Danger of a Single Story 

Those belonging to any marginalised class of people sitting outwith the dominant, power-holding group in sociey often find descriptions and depictions of themselves – as a class or group of people – to be reduced to one narrow, restricted narrative. That one single story is all that anyone ever sees, hears, or reads of that group.

If they even see, hear, or read any story at all.

Adichie gives many examples throughout her speech: writing stories as a little girl about British children drinking ginger beer, playing in the snow and talking about the weather, reflecting the stories she’d read as a child; her perception of her family’s houseboy as poor, but nothing beyond that; much later, of being told that a novel of hers was not an accurate representation of African life.

That last example: I’ve read accounts of similar experiences of autistic authors – their account of autism, directly informed by personal experience, is not seen as “authentic” because it doesn’t square with the dominant narrative – that single story that most people have seen, heard or read about autism and autistic people.

It can’t be true, because it’s not what we’ve come to expect.

There are lots of people out there who feel prejudice, contempt, disgust, or hatred towards disabled people. (And this is leaving aside the more casual, everyday “benevolent” ableism. Thank you for inspiring me! Well done for doing normal stuff despite being so horribly afflicted! How brave you are!). Many people do not see disabled people as people. And there seems to be a special type of stigma reserved for autistic people, and I believe it’s the single (false) story about “lack of empathy” that’s at the heart of this. If a person does not feel empathy, how can they engage with the human experiences of others? How can they truly be human?

Nowadays, as a self-aware autistic person who just so happens to experience hyper-empathy, this notion hits me, and hurts me, to the very core of my being. It’s one reason for my choosing to use identity-first language. To take ownership of the label for which so many people feel such contempt, fear and disgust. Because we’re all people by default. It’s a given.

I wrote in my last post of 2016 about how, despite being autistic, I’ve only come to this realisation that autistic people feel empathy in the past year.  And this is all because I’d been influenced by what I knew of autism, based on what I saw of autism in the media. My layperson’s limited knowledge. A single story.

Male. Middle class. Poor personal hygiene. Robotic. Difficult. Extremely fussy. Haters of everyone around them. No inner life. Either an uncommunicative, nonverbal headphone-wearing boy who alternates between scowling into the middle distance and lashing violently out at others, or a socially-inept, bowtie-wearing, humming middle-aged übernerd. The bane and burden of their exhausted, careworn parents’ lives. Robbers of their families’ energy, love, goodwill, and freedom. Tragedies. Impossible to live with, but incapable of looking after themselves. Their personhood lost to the scourge that is the disease of autism. I will hold my hands up and admit that I used to be horrified at the idea of autism, because I didn’t understand it.

I most certainly didn’t see myself.

When it was suggested to my husband and me that we should look into the possibility of having our daughter assessed for Autism Spectrum Disorder, I was alarmed. Once the idea had been planted in my mind, I even questioned whether my (highly intelligent, imaginative, creative, compassionate, kind, sociable, hugely funny) daughter had any inner life at all, because so much of her early speech was echolalia. If she couldn’t express herself in her own words, was there anything in there?

(Yes. I know. Please understand I don’t think this now).

It’s horrifying to think that the prevailing image of autism is so negative that even people like me – autistic people like me – don’t recognise it until we start delving more deeply and reading more widely. Over the course of doing research, reading blogs, and lurking on Twitter, I came to the realisation that there were people like me out there. And they were all autistic people.  It was only after reading these “unofficial” accounts – these other stories – that I saw myself.

I saw myself as autistic.

Still not the full story.

And – lo and behold! – both my daughter and I are now formally-diagnosed. And I’m so much happier because of this.

And, more recently, I have seen more people like myself in the media. Over recent months, I’ve seen a small flurry of articles in the press about the experiences of late-diagnosed autistic adults. Often, the focus is on the “phenomenon” of the late-discovering autistic mother, who only seeks a diagnosis after experiencing a series of lightbulb moments whilst researching her autistic child’s “condition”.

We’re a curious bunch, us adult-diagnosed autistics. On the one hand, many of us experience – until the point of diagnosis – a lifetime of apparent good fortune because we are not stigmatised by the “label” of being autistic. On the other, there are many ways we’ve been disadvantaged, let down, misunderstood, traumatised, and neglected by that very lack of a formal explanation for why we are the way we are. And we may not be judged for being autistic, but we are judged nevertheless because we make such a bad job of being neurotypical.

But then, there’s another thing. There’s the issue of privilege.

There are so many autistic people who are not visible; who are not portrayed or represented; whose stories are not told.

I’m doubly-disadvantaged in a patriarchal, neurotypical-dominant society by being both female and autistic. But one thing has struck me about so many of those recent articles. Almost all of the people portrayed are white, middle-class, cisgender, and (as far as I can gather from the narratives) heterosexual.

Male or female, they’re an awful lot like me.

My being female made me among those less likely to be diagnosed at all. And yet, the fact I have a diagnosis is due, in no small measures, to privilege. My mother’s educational background and professional qualifications enabled her to “spot” my daughter’s autism. I myself have had a decent education. I have ready access to the internet. I grew up in a financially-constrained but nevertheless stable, supportive middle class home. I’m white. I had resources, skills, and expertise at my disposal that enabled me to conduct thorough research and prepare a “case” for being referred for assessment. I was so thoroughly prepared it would have been hard to argue with me, but then, I’ve had a lot of professional experience at gathering evidence and mapping it against criteria – professional experience I wouldn’t have gained had I not been highly educated.

And doing research into something like autism – especially research of the informal kind, such as reading blogs – is a damned sight easier if you can readily find the stories of people who are like you. And, like it or not, I may be part of an underrepresented group of formally-diagnosed autistic people, but there are still more people like me – white, cisgender, heterosexual, often mothers – receiving a diagnosis than those autistics who are further marginalised. And we are therefore that teensy-weensy little bit (understatement alert!) more visible.

If we don’t see ourselves represented in any way, if the existence of people like ourselves is not acknowledged, then how can we truly understand our place, or our space, in society? And if we don’t see this, how the hell can other people see it?

There are white autistic people. There are autistic people of colour. There are male autistics, and female autistics. There are cisgender autistics, and there are oh-so-many autistic people whose gender identity falls somewhere under the transgender umbrella. There are straight autistics. Queer autistics. Autistic people who are otherwise abled in every conceivable sense, and autistic people who are multiply disabled.

And so often, so many autistic people remain invisible. Their stories are not seen, heard or read. And others like them don’t get to see themselves. In this Toast interview from March 2016, Neurotribes author Steve Silberman – a neurotypical person, but a fantastic ally and signal-booster – describes a telling conversation:

Recently, I was on a plane talking to a young black woman who worked in D.C. When I told her that I’d written a book about autism, she said, “Autism is a white-people thing, isn’t it?”

If you’re autistic, but you don’t see yourself in any of the available portrayals or representations of autism, how can you fully see yourself as an autistic person? How can you identify as an autistic person?

How can you seek diagnosis?

Get understanding? An explanation? Support? Access to services?

Being self-aware

People with privilege often talk over minority or marginalised groups.

Ableist parents and health or education professionals might talk over – and very loudly about – the nonverbal autistic person sitting right in front of them. Autistic adults often feel “talked over” online by neurotypical-run autism organisations and groups.

Health professionals and journalists speculate that transgender children “might be autistic” without being able to comprehend that the two things are not mutually exclusive, because they talk over the heads of, and fail to hear the stories of, #actuallyautistic trans adults.

In professional settings, women are criticised as “bossy”, “domineering”, or “nasty” for demanding even a fraction of the attention or recognition their male colleagues and counterparts get – and this situation is further compounded when colour, sexuality, and (dis)ability come into the picture.

One thing I’m a little nervous about, in attending the SEED workshops, is the potential for my autistic tendency to hog a conversation – to talk over others – to prevent other voices in the room from being heard; other stories being told. After all, I’m autistic and female, but in other respects I’m fully accustomed to being perceived as far less “other” than many. Other aspects of who I am put me in a position of relative power and privilege.

I’ve been informed that a timer will be used to allow everyone in the space equal time to contribute, which will test my anxiety levels. My brain’s conscious-social-interaction-analysis machine might well go into overdrive at times, and there might be moments when I feel exceedingly uncomfortable, and I will need to get out and get some air. But I believe all of this will be worth it for the potential learning that will take place.

Because it will be vital for me to hear other stories.

And at times the people who see, hear, or read the many and diverse stories of autistic people will be made to feel uncomfortable. They will be challenged. But they will need to be self-aware, and accept that discomfort, if it allows those stories to come through.

The more people like us – in all our complex, myriad forms – are visible, the more we can see ourselves. And the more the world can see us for the humans we truly are.

And our lives, identities, and experiences will no longer be reduced to a single story.