When I am disabled

Autism, including Aspergers, for better or worse, is classed as a disability. We could debate the rights and wrongs of that for a virtual eternity, and probably never arrive at a solution. A disability by the medical model: definitely no; although autism is often co-morbid with more physically disabling conditions. By the social model: yes. Yet by this argument it should be possible, in the right environment, for autism not to be disabling at all.

I am very fortunate. With increasing understanding of how my mind and senses work, and the things I need to stay healthy and functioning, I’ve been able to mould my life around those needs. I live alone, in a quiet area, which gives me enormous control over my home environment. And one of the most crucial benefits of my job is the autonomy I have over my working hours. With flexitime, as long as I put in the right number of hours per week, no one minds if I leave 2 hours early one day and make it up the next. Learning to use this for day-to-day self care and management has made a very positive difference to my life. I would go so far as to say flexitime is as important as any of the reasonable adjustments I’ve requested, possibly even essential for me to function effectively. And probably 90, 95, even 99% of the time now, I do function effectively. Day to day, I don’t feel “disabled”.

Sometimes, though, it strikes home.

I feel like I’m doing really well at the moment. Building on the things I learned over the past two years of crises, I’ve been picking up new challenges at work and pushing forward with my career aspirations. I’ve been overjoyed remembering the sheer satisfaction of working hard and being repaid in actual success! After those endless months of running as hard as I could just to stay where I was, sometimes it does seem too good to be true.

But this sort of thing has a cost. Using expensive social, professional and executive functioning abilities, even to have fun, drains my energy much faster than I’d like. And I’m still really bad at scheduling enough time off work or switching off when I’m busy and need down time. So inevitably, there was a meltdown. And unfortunately, it just kept giving.

The meltdown itself was fairly subdued. I knew it was going to happen halfway through the last choir rehearsal before our concert. The organ was too loud – so loud it hurt. I had to time my breathing, exhaling slowly through the pain, like pushing weights you’re struggling to lift. The hand drier in the ladies bathroom made me scream and cover my ears. In the two hours between the rehearsal and the concert, I didn’t talk. I hid in my coat, clinging to the passenger seat of my friend’s car as if my life depended on it, and cried. That was all. That night the organ didn’t hurt. We made something beautiful. The next day I didn’t do much. But it was still too much. I needed more time.

I went to work on Monday. I didn’t have to talk much. There weren’t any meetings in my calendar. I remember looking at the previous week and going, “my God, that’s why I had a meltdown”. I thought briefly about how to learn from that and see it coming in the future, but it felt like too much effort – I was too tired. I’d do it another day.

Tuesday came, and with it an opportunity: one of those small, everyday chances that when followed repeatedly add up to something that matters. I took it, ran with it, nailed it – boom! By 11am, I was wrecked. Wednesday didn’t look good. I caved in and booked the afternoon off. I couldn’t bring myself to take the day.

You know where this story goes.

On Friday morning I arrived at my first meeting of the day, a whole and complete autisticly overloaded wreck. It was classic “low-functioning” stuff. Rocking, avoiding eye contact, staring at the table or the floor. Muttered echolalia – lots of it. “Run, run, run”. My favourite word when I’m anxious, uncomfortable, embarassed; when I want to get out. “Run”.

I didn’t manage a full day at work that week. People saw things they shouldn’t have seen. Yet no matter what my echolalic mind was screaming at me, I couldn’t actually run. It just wasn’t a solution that occurred to me. Never mind that this is what paid sick leave is for – there’s no category, you see, for autistic overload, in the tick-boxes you have to choose from on why you’ve called in sick. So clearly I’m not allowed to go home sick if I can’t spell my own name. There’s no rule for that. It must not be allowed.

This is when I am disabled.

Next week I will have to explain to my colleagues why they saw what they saw. I will have to reassure them that this is a temporary thing – that it’s like being jet-lagged or having the flu. That even though I can be staring at a wall one day, crying, stumped by dilemmas that a five-year-old could overcome, that next week I can be even brighter than they are. That this is what it means to be autistic. I will have to swallow my pride, again, and trust that they will not judge me. And then I will talk to my manager and we will make a “rule” that I can follow, so that next time I will cope.

As long as next time is the same.

Pacing

On Friday I shut down at work. When my boss saw me, he asked how bad it was, and if I needed to go home. I did need to go home. So – somehow! – I said yes.

It was a very strange moment. I’ve spent the past year or two trying to set up safety mechanisms to cater for happenings just like this. Talking about accommodations. Making creative use of flexitime. Skirting around the issue of “bad days”, delicately, never quite committing myself to describing what it looks like when I am incapable, completely, of existing in company. They’ve seen the irritability, the frustration when I can’t find words, but they’ve never seen the end point. How I can stare at a plate of food and not make the connection to actually eat. When I just switch off and fade out, staring into space. How my system shuts off everything, refusing to process what I see or hear without conscious effort. How everything is an instinctive response. Decision-making is impossible. Something I can no longer force.

Until recently, I would have said no. I would have felt guilty, berated myself for what I am and the decisions that led to this point. I would have sat at my desk all afternoon, struggling through the simplest of tasks. That was the instinct: to hide. A deeply held belief that my identity is shameful, that I do not deserve supports, even those I invested and risked so much to build. But this time, I said yes.

I’ve changed.

Coming out of those places, of shutdowns and meltdowns and overloads, I can’t help but overthink. It’s what drives me to write. Although I am rarely asked, I want to find the words, to paint a picture for people who don’t share these experiences. I want them to know what it’s like for me, why I disappear from the world. I wanted to explore, for myself, why I no longer felt guilty for the sorts of mistakes that led to this shutdown.

The thing is, this week was challenging. A lot of non-routine things were going to happen. The plan was complex in places; the schedule was busy. No red flags jumped out at me, but several – if I had been looking – were distinctly orange. And I was tired going in. Perhaps I should have seen it.

Let’s take a look at those flags. A long evening straight from work: 2 events in a row, buffered by dinner in an unfamiliar pub. Cycling out in unexpected, driving rain. A 9 o’clock meeting the next day. Two. Doable, I thought. Then a nagging headache all morning, artificial meeting room lights too bright to countenance; the sweet, soft relief of Anadin at lunch time, and the feel of my body relaxing, losing tension in quantities I hadn’t recognised I’d carried. Every warning light suddenly flashing. Looking at my schedule for the next morning. Another 9am. And a 10, and an 11. And somewhere to be at 12. Maybe I should reschedule the 10 o’clock. But I had the evening free. I’d be OK.

And that’s where I failed. Because after several weeks of things going right, I’d forgotten my limits. I’d forgotten how too many things, even simple things, can make me fall over so completely. I’d forgotten that one evening to myself, given where I was, wouldn’t be enough to set me up for the next day.

Those orange flags weren’t red. For most people, they probably wouldn’t even be orange. Three meetings in a morning probably wouldn’t even raise a flag in most people’s eyes. But for me, that’s a challenge. And in combination with too many other challenges, that’s a red flag. The guilt isn’t that I fell down. The guilt is that I didn’t act to avert things when I had the chance. The guilt is that I got over-confident. It was going to be OK. I’d been doing fine. But I’m still autistic.

For most people, there is slack in the schedule. A bad day is recoverable. But for me, a week at work can be like running a race.

Picture a distance: the furthest you can run. (Or walk. Or, if you can’t walk, I expect you won’t need this analogy to understand.) Picture yourself at the start of the distance, taking a breath. You’re prepared. You know your pace. You know what you can take. You’ll stride out long, slow, easy. If there’s a hill, you’ll slow down. But you’ll keep going.

It takes some mental effort, pacing that race. You want to finish in a good time. But at the same time, you know exactly how hard you can push. You know if you go too hard, you’ll run out too early. You’ve done it in training, when you were still exploring your limits. You’ve felt that burning in your legs, the weakness, the whole-body exhaustion, wanting nothing more than to drop and curl up on the pavement. You’ve walked home in your running kit, shivering as the sweat cools off your back. Avoiding eye contact with anyone you pass. Wondering what they’re thinking of you. But today is the day you’ve been waiting for. And you’re going to get it right.

Imagine each week starting like that race. You know you can do the distance. You feel confident: in control. But you have to be prepared. You have to carb-load. You have to get enough sleep the night before. And if the route changes at the last minute – a diversion, a longer or steeper road – there’s always the risk that you’ll flake out before the end.

Anyone can screw up a race. You feel bad. It’s one stand-out event, you’ve prepared forever, and you let yourself down. It’s your own fault.

But there’s no need for guilt. Because you pushed yourself. You tried. You misjudged. There was shame; but there was also understanding. It taught you something. You’ll try again next time.

Every time I fall, I feel guilt. But every time I fail, I remind myself that everybody fails. Everybody makes mistakes. I’ll try again next week. And I’ll make it right.

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.

Nice people

I’m struck sometimes by the cognitive dissonance there seems to be in the heads of a very specific breed of “nice people”. Nice people know how you feel. Nice people sympathise with you. Nice people make soothing noises when you break down and cry, and tell you that everything is going to be OK. But tomorrow those nice people will do sweet F.A. to make it so.

Nice people, you see, don’t need to change. Their sympathy is enough. They know how good they are with people – they’ve been told so all their lives. They couldn’t possibly be part of the problem.

The problem with these “nice people” is their pride. Whether or not unconsciously, they are proud of being nice. Their natural way of being makes others feel comfortable. It’s a role they know from heroes in stories and leaders in films, the aspiration of many. They share others’ pleasure and soothe their pain; and they draw what is a perfectly innocent satisfaction from their social value.

Honestly, I do understand. It’s rewarding beyond measure to know that you can help or inspire another person. There is a deep, quiet joy in being able to support a friend or loved one, in the everyday things of life as well as the crises. I can imagine how that situation being normal, and not the beautiful exception, might shape a person’s self image; and might shape what they come to expect from the world.

Nice people know, with quiet certainty, that their value is intrinsic. This is their gift. They always know what to do and what to say. They’ve never had to think about the impact of their actions. That impact has never – to their knowledge – been anything other than good.

And then they meet me.

Actually, it’s not only me. It’s anyone they meet from the Other Side: poor, frail, depressed, sick, disabled. Anyone whom the system does not support. Anyone from whom, in fear or in pain or through simple lack of ability, the social niceties in just one of many crises might slip away.

Nice people are hurt when you snap at them to STOP causing you pain. Nice people feel pressured when you beg for their help. Nice people know the best way do things is gently, with trust and with patience. They’ve never had to step out of their own heads to feel what you feel. And that’s the danger, right there: that they’ll treat their own passing sadness with more urgency than your desperate, existential need.

Nice people are used to feeling respected. They’re not used to holding back their feelings when someone is rude to them. They’re not used to thinking about the “why” before they complain. They don’t know your pain. They don’t mean to hurt you. But they do.

Nice people are wonderful when things are going well. When you’re passing and functioning and ready to have fun. And nice people can be great at propping you up for a while, just until you get back on your feet. They can be there for you. They know all the sorts of crises that normal people go through – losing friends, breaking up, divorce, bereavement – and they really do mean well. They want to be able to use their skills to help you. But they are so sad, so disappointed, when you can’t be fixed.

What those nice people don’t realise is that we can’t all be like that. Some of us have lives where being on your feet and fully alive is the transitory thing. Some of us can’t rely on being there for others, not at just any time. Some of us save ourselves in anticipation of those glorious days when we’re not sad, frightened, confused or in pain. Some of us mourn those selves that barely see the light of day.

Some of us need “nice people” to be different. Some of us need them to realise that speaking up, again and again, when your basic needs aren’t being met isn’t selfishness: it’s survival. That being in constant exhaustion or confusion can preclude giving away parts of ourselves to support others. That making one choice between being realistic about our capabilities or chronically unreliable doesn’t make us bad people. It’s just that we didn’t have the choice you had. To be nice.