Can we really be Disability Confident?

I’ve recently come across this scheme which the government is promoting to make businesses more “Disability Confident”. On the fact of it, and in fact to a certain depth, this is enormously positive. The webpages are not a gimmick: they state in clear language the benefits to the employer of having good disability related policies to employ and retain disabled staff, supported by facts and figures. In particular they emphasise the frequency with which this actually means retaining skilled staff who become disabled during their working lives. This is a huge selling point for employers, for whom recruitment of skilled workers can be an enormous expense.

There are three levels to the Disability Confident scheme: an employer can be committed, Disability Confident, or a Disability Confident Leader. The documentation is clear on what should be done at each stage to achieve and maintain the label of Disability Confident. The principles set out, in that they make good sense to me as a disabled person, are frankly above and beyond what I have come to expect from British culture today! If this means what it has the potential to mean, that we might be moving forward as a country from the Autism Act 2009, through the Equality Act 2010, to progressively stronger guidance and legislation to protect and support disabled people, it would give me real hope for my future. The kind of hope I haven’t seen since beginning to pursue a diagnosis, almost two years ago.

There’s only one thing that worries me about this scheme, and that’s the phrase “self-assessment”.

In the level 1 documentation, on becoming “committed” to Disability Confidence, only once is it suggested that disabled people should be part of the assessment process: to test that the employer’s interview process is accessible. The second level, of actually being Disability Confident, adds the requirement to “[value] and [listen] to feedback from disabled staff”, including taking appropriate follow up action. Things like “making reasonable adjustments” and “promoting a culture … where your employees feel safe to disclose” are positive statements of actions that a business can take in making itself a safe and secure environment for disabled people. The level 2 documentation, if adhered to, describes an environment in which I personally would feel valued, confident, and encouraged to work hard towards achieving my full potential. It’s all there. But it’s not until level 3, a “Disability Confident Leader”, that the employer’s culture and environment is subjected to any serious assessment by actual disabled people.

There are plenty of people I know – otherwise hardworking and decent people – who are nonetheless thoughtless and occasionally discriminatory on the grounds of disability. It is difficult, when the lived experience of disability is so different, and particularly in a culture that infantalises and persists in speaking for and over this “lesser” group, to learn to appreciate the perspective of a disabled friend or colleague. It is hard for non-disabled people to realise the urgency of “reasonable adjustments”, or the stark reality that not only is there such a word as “can’t”, but there are people they work with who are forced up against that “can’t” every single day of their lives. Until you know that – until you have felt it, through thoughtful empathy or lived experience – it is impossible to appreciate how demoralising that can be.

So I wonder how much, through self-assessment alone, this Disability Confident scheme will be able to achieve towards improving the experience of disabled people in the workplace today?

For any employers out there considering the Disability Confident accreditation, as a disabled person fully committed to the wellbeing of my own organisation, I would highly commend it to you. But I would encourage you also to ask some hard questions of yourselves that are perhaps not stressed enough in the documentation. I would ask you to engage actively with disabled individuals and any disabled communities within your organisation. Ask them what they need to do their jobs well. Ask them how easy it is to get reasonable adjustments, and to be fully confident that agreed supports will be in place when they need them. Ask them anonymously, and be prepared to hear their honest answers.

Because the truth is that, even with the best will in the world, you may not yet be Disability Confident. And if you want to become so, you will need to ask yourselves hard questions about the past. When a deaf employee requested an external palentypist, and you had to refuse because some information was “commercial in confidence”, did you take the time to explore possible alternatives? When a dyslexic employee asked for notes to be taken in meetings, because he struggles to parse verbal instructions, did you tell him that was just too much of an admin overhead? Did you consider the impact on the disabled employee: which parts of their job would become more difficult or even impossible to do without these supports? In the future, what would you like to change?

Disability Confident is a hugely positive step in a culture that undervalues disabled people and the work they do. But self-assessment, where any organisation can blithely state that they are already Disability Confident, is not enough. To become safe and secure places where disabled people can work and thrive, many employers will have to recognise harsh truths around where their processes are not currently working. An essential part of the process of becoming Disability Confident is inviting honest input from disabled employees, accepting criticism with humility, and being willing to change.

In the future, I look forward with hope to the example set by Disability Confident Leaders, and their efforts to make the working world safe and accessible for us all.

Scenes from childhood

Like many on the spectrum, I was not a happy child. Having supportive and loving parents, I was luckier than some. And I have seen some photos of me, as a very young child, smiling. But my abiding memory of the camera was always the gentle encouragement to stop frowning, to look happy. I was rarely happy.

My primary school years were a particular trial for me. Infant school is peppered with memories of solitary play, of watching from the corner of the playground or imagining wild jungle scenarios in my own little world. Quiet, strange, a little lonely, but mostly harmless. But in junior school, surrounded by peers becoming more and more aware of the social world, my strangeness could no longer pass unnoticed. Articulate on paper but slower in words, I was bullied mercilessly: first by older children, and then by my peers. The saying, oft quoted by my parents, that “words can never hurt me” provided no comfort. Sticks and stones I could have dealt with – those I could learn to fight – but somehow I could never get to grips with words. I remember my mother hugging me, telling me I had to try to be less sensitive: don’t let them see they’re hurting you and they’ll go away. I couldn’t hide it.

I was around 10 when I realised I could hit people to get them to stop. I learned it by accident one day: overwhelmed with the rage and shame of constant public humiliation, I just lashed out. This, I later found, was particularly effective against girls. Since I’d had a growth spurt by this point and was one of the tallest in my class, the verbal bullying I’d been defending myself against carried little weight with teachers faced with a cute little sobbing blonde pleading I’d hit her. But it was the only way to make them stop.

I don’t like to think about where this path would have taken me. Thankfully, my secondary school was focused on academic achievement and had an excellent anti-bullying culture. Having flared up a couple of times, and been met by peer behaviour of surprising emotional intelligence, the brutal lessons of junior school were quickly scrubbed out. But it’s sobering to realise the full impacts of being in an unsafe environment. However strong you are, eventually all you are left with is how to survive.

The lessons of childhood have a strange habit of popping up again in adult life. It’s easy to get cocky, thinking you’ve outgrown the vulnerability that pushed you to anger and violence. I thought that chapter of my life was over. I was wrong.

These past few months, I’ve been in a terrible place. From what is now a safer space, with hindsight, I can’t describe it as workplace bullying. But even though there was no conscious intent, the actions of this person and their treatment of me had pushed me into a place of desperate terror. Held ransom to social and communication abilities I did not have, there was nothing I could do to take control of my situation. Whatever I did, I couldn’t win.

As the months dragged on I grew to hate what I’d been turning into. I’d regressed into that space of desperation: of lashing out at the tiniest thing, seeing every challenge as a threat. On the surface I kept fighting patiently for support, trying not to scream the urgency while my self-care and home management abilities crumbled. But the constant performance took its toll. Work became the subject of my nightmares. With the threat of retaliation for autistic behaviours always poised over my head, fuelling the very distress that makes those attributes more difficult to mask, my position was precariously unstable. I felt – I was – unsafe. And all of the unhealthy attitudes and mechanisms I’d used as a child came back in full force. The positive lessons of my adolescence protected me in part: I didn’t hit, I didn’t shout. But I couldn’t sit still. I paced in meetings. I couldn’t make eye contact when the bully was in the room. I physically shook with adrenaline, with the effort of suppressing my anger and fear.

It’s been a few weeks now since the situation was diffused. This person and I no longer work closely together, and my line manager has been wonderful in helping me get back into a healthy routine. I’m no longer pacing and shaking in meetings. Things are settling down.

I’d like to say I’ve learned since I was 11 years old. And I have: I’ve learned many things. I’ve learned the importance of trusting my own lived experiences over the voices of authority. I’ve learned that nothing can be taken for granted. I’ve learned that patience through pain is the only way to get what you need. And the most powerful positive lesson of all: I’ve now learned that eventually, patience can work. Experiencing the outcome of patience and perseverence can only feed my confidence in pushing for future outcomes.

But I haven’t learned how not to be a monster in between.

Compassion, I think, is the main thing to take away from all of this. A deep understanding that behaviour and attitudes, of myself and of others, are often much less about the person and more about the environment they’re living in. A hostile environment makes monsters of us all.

Interpreting signals

One of the things I’ve observed about myself and other autistic people I know is that we’re not good at listening to our own needs. This is generally recognised as an autistic trait, but whether it’s completely inherent or partially learned is an interesting question.

On the “nature” side of the argument it’s clear that the ability to hyper-focus on a single topic – a talent shared by many on the spectrum – could interfere with the ability to process other signals. Descriptions of this trait are often framed in terms of a deficiency in social skills, manifesting as a resolute unresponsiveness of the autist to other people around them; but those willing to alter their perspective might note that the unresponsiveness is to almost any disturbance, and not just that which would usually prompt a social interaction.

But there are environmental factors too. The trouble with having fundamentally different self-care needs is that throughout our formative years, we, like all children, learn from other people. It’s a rare and incredible individual who can develop an understanding of their own needs and act on them effectively when constantly contradicted – implicitly or explicitly – by the rest of the world.

So it’s possible this lack of self-awareness is an autistic trait, or that it’s psychologically ingrained through years of learning that our needs can’t possibly be what we think. Or probably both. Whatever the reasons, I certainly have difficulty with this. It’s often hard for me to interpret the signals my body gives me to determine what it needs.

The most obvious way this shows itself is in how I respond – or rather, don’t respond – to the onset of fatigue. This wonderful ability to hyper-focus on the best things in life interferes not only with external signals, but with internal. The stereotype of the “mad scientist” who forgets to eat or sleep seems entirely plausible when you regularly “wake up” from deep focus to realise it’s 10 pm, you haven’t eaten yet and you REALLY REALLY REALLY NEED TO PEE.

The difficulty of ignoring or not recognising internal signals manifests in a variety of other contexts. My response to pain, for example. I’ve learned over the years that I’m probably hypersensitive to pain; but knowing this has led me to ignore certain signals that, with hindsight, I should have listened to. It takes me a few times running on a strained muscle before I’ll believe the thing is actually an injury that needs rest, rather than my body just making a fuss about nothing.

Yet another one for me is hunger. I have an enormous amount of trouble distinguishing between hunger and fatigue. When struggling with depression, I’ve curled up exhausted in my armchair of an evening with no energy to move, read or even cry – not realising the crucial point that, having taken no interest in my lunch or afternoon snack, my mood will lift exponentially if I could just get up and cook some food! But even at better times, I can often only tell by experimentation whether I’m actually hungry or if I need to zone out for a while.

A really annoying thing about hunger is when it strikes out of the blue. One minute everything’s fine, the next I’m shaking and weak, my stomach completely hollow. The feeling is absolute, immediate and all-consuming, such that I’ll stop whatever I’m doing as soon as humanly possible to look for food. Chatting with an autistic friend I wondered aloud why more people don’t act so driven when hungry. He postulated that perhaps their bodies are better at giving subtle signals, allowing them more time to act, before the need is urgent. My pragmatic solution these days is always to have a snack in my bag with me, just in case.

Mental fatigue is actually the one that causes me the most difficulty in everyday life. It’s really good to be able to focus intensely on my job, but work life doesn’t leave me much in reserve. Although there are times when I struggle to get focused on a task, in my first couple of years as a scientist I would regularly find myself absorbed until an hour or two later than I should have left the office. It wasn’t until I was completely exhausted that I’d “wake up”, suddenly, to realise I had barely the energy needed to get myself home. Once home and fed, with no down-time to recharge before bed, the next day would be a hazy blur of mental exhaustion. If I overstayed my hours on a Monday, it wasn’t uncommon to lose the rest of the week. In the end the only way I could break the cycle was to set an alarm on my phone, to distract my attention at the end of the working day.

And the flip side of mental fatigue, of course, is self-discipline – or at least, the appearance thereof. Although my focus, once established, is pretty much unbreakable, to achieve that state in an office full of people can be tortuous, and is often impossible. The level of effort needed to sustain these failing efforts is far above that which neurotypical people exert. But unfortunately, it’s often the number of hours spent at the desk rather than the actual work achieved which matters day-to-day.

Of course, these are just surface issues. I could spend many pages on the long term mental and physical health impacts of self-neglect. But that’s not where I am today 🙂

On the whole, I don’t really want to fix this. I’m happy with my hyper-focus. I do my best, most satisfying work when I’m fully absorbed, and not distracted by what my body needs! But it’s important for me to achieve a balance, maintaining my health and wellbeing enough so that I don’t crash and burn, and can continue to focus on doing what I love over the longer term.