Maybe I’m not bad at working.
Maybe I’m just bad at pretending to be able-bodied.
Throughout my entire life, there is a certain kind of advice I’ve heard over and over again, as if on constant repeat on the radio. The advice has not always been directed at me specifically – but rather, directed at everyone that don’t neatly fit into the tiny square box human beings (and their entire personalities) are supposed to fit intoo.
And I just happen to be one of them.
From a work-related point of view, it sounds something like this:
– Be more disiplined,
– Become more resilient,
– Take more responsibility for your career,
– Push through any obstacle,
– Just find a way.
And, don’t get me wrong – this is not nesessarily bad advice!
I am a firm believer in personal agency. I believe we all have a personal responsibility for the choices we make, to learn what we can do, and build the lives that makes sense for the people we are.
However – there is a massive problem with the way this advice is usually delivered.
First and foremost, when these types of advices is made, their deliveries assumes the issue is always the individual. That a person lacks these things in their daily lives, and that gaining it would settle everything for the better.
And that is just not the case!
Sometimes the problem at hand has nothing to do with the individual- and everything to do with the environment said individual is asked to function within.
And by marinating in these thoughs regarding my own life, I’ve come to a few conclutions throughout the years.
Conclusions like;
I lack neither disipline nor resilience in relation to work. But there are career obstacles and pathways (litterally) cut away from me, due to things completely out of my control.
Thus, I cannot take any responsibility for its prospects either.
Because, maybe its not that I am bad at working. Maybe I’m just bad at pretending to be able-bodied, in a system relying on pretence.
Which probably explains why I love the concept of remote work so much.
We have confused a ‘workplace model’
with the concept of work itself.
When most of us picture a «proper job» many of us picture roughly the same thing:
– Wake up
– Commute
– Arrive at workplace
– Stay there for X amount of hours,
– Attend meetings
– Answer messages
– Seem visibly productive
– Go home
– Do it again tomorrow…
Now, there is nothing inherently wrong with this type of model. And plenty of people thrive within it.
But it is only one model of working, yet we have all somehow allowed it to become ‘the measurement’ of whether someone is a «real» worker.
And the issues with this type of measurements are plenty – as it entails that:
– If you are able to be physically present for eight + hours you are committed.
– If you need to work from home you are difficult.
– If you need flexible hours, you lack disipline.
– If you need frequent breaks you lack resilience.
– If your health fluctuates, you aren’t reliable (if you’re even hired at all).
This matters!
Because – it means that we cannot solve the problem by just telling disabled people to try harder.
And if your body makes conventional employment impossible?
Well, then you are always the problem…
Except that employment outcomes for disabled people tell a very different story throughout the world…
The International Labour Organization’s research has found substantial disparities in employment, unemployment, and earnings between people with and withouth disabilities. Importantly to note, these differences cannot be adequately explained simply by education, experiences or occupational category. Many disabled people have higher, wanted educations. Many of these people have also had a variety of experiences before becoming disabled.
Instead, the research concludes that the barriers made for hiring are for the most part structural. This includes structural discrimination towards a disabled workforce, a structural lack of accomodation for a potential or already existing disabled worker- and a structural inhability to alter the organization of ‘work’ in itself.
What if we designed work differently?
Now, obviously – I am not claiming that we should make all and every workplace remote, just because I find remote work better for my physical disability and mental health prospects. That would be impossible.
Similarly, I do not think that remote work is necessarily the answer for everyone, disabled or not.
Certain types of work need workshops, some people thrive in offices – and some form of work obviously require a physical presence.
The point I am trying to make is much simpler:
– Why should one particular way of working be treated as the default, when potential workers don’t come in one particular configuration?
The ILO’s research has already recognize many of the things that can make employment more accesible. Their own guidance on workplace adjustments, for example, includes aspects like the modification of both working time, job content and work organizations – as well as both physical and tecnological adjustments. The EU similarly treats reasonable accomodations as an important part of enabeling people with disabilities to participate in employment.
So, perhaps we should stop thinking twice about accesibility as something we reluctantly bolt onto a workplace after a disabled person arrives – and instead treat accesibility as something embedded in the design of said work in the first place. That way it can be valuable to everyone when in need of it.
And there is a number of ways this can be done, by default.
- Let «Presence» stop being the definition of productivity
If a task can be completed remotely, why must it necessarily happen in an office? This does not remove the potential for office work – it simply adds choices for each individual to make.
After all, if an employee produces exellent work from their kitchen table, does the work somehow become less valuable because their manager couldn’t see them do it?
I have never understood why visibility has become such a close relative of productivity. Unless it’s based on the need for control – and the lack of trust, In which I would say that the company has much bigger issues to handle.
After all, someone could spend eight hours in an office and accomplish very little (been there, done that!) – and someone else could spend four hours highly focused at home, and produce something exceptional (once again – been there, done that!)
The number of hours someone is visible to an office manager, should not be the same as the value they create. - Make Flexibility ordinary
For some disabled people, having flexibility in ones daily life is not a luxuary; it is the one thing that makes employment possible for them.
Perhaps someone works better later in the morning, or need various breaks throughout the day.
Perhaps they can even work for several days being excellent, before they need a quiet day to themselves.
Perhaps medication affects their energy, or they have regular hospital appointments (usually within work hours).
Perhaps their condition(s) – and with that their health, fluctuates during the seasons.
And perhaps they are still exceptional at their work!
A flexible workplace does not necessarily mean lowering ones expectations, it just means changing when and how various employers reach them. - Designing for fluctuating health-aspects
This is probably one of the things we still have remarably poor understanding of in society.
We often imagine poor health and disabilities, as something which is static in its nature;
– You have a wheelchair = you need a ramp; problem solved!
But many disabilities fluctuate…
Some days are good! Some days are bad! Most days are somewhere in between.
And sometimes, a person’s health can change dramatically, withouth warning.
For someone like me, for example, an epileptic seizure is not something I can scedule neatly in between meetings. Similarly, various seizures might come in the daily – and need various types of recovery.
There may be medication changes, leading to a severe change in physical and/ or mental health (for better or worse):
There may also be periods where my brain needs more rest than usual (as in up to 17 hours of sleep). This does not nesessarily mean that I am incapable of working all together.
It means, however – that my capacity is not identical every single day. And that said capacity might change through the year(s).
Personally, I think a good workplace should have mechanisms in place for temporary adjustments and recovery – instead of treating every change in health as evidence that someone is no longer employable. - Stop measuring endurance instead of contribution
In many ways, this might be my biggest issue with modern productivity culture when within the workspace. Because today, we highly admire, and look up to endurance, with little knowledge of needed restitution. AKA;
– How early someone wakes up
– How late they work
– The amount of meeting they attend, and email they respond to
– How little they sleep.
– And how much they can squeeze intoo a day.
And as someone who used to have a large #FOMO mindset in my late teens, early twenties (with nothing to show for it other than draining myself out of energy) it is completely nuts!
None of these ‘endurance’ metrics tell us anything about how valuable a person’s work is.
Because, on the one hand – the work could be exceptional.
On the other, it could be complete trash.
And I do not want to live in a world in which whoever can pretend to be A-OKAY for the longest takes the prize, completely regardless of the quality of their work, the quality of their health and the quality of their contribution.
Instead, I wish for a society where the quality of what someone contributes actually matters. And disabled people definately have valuable contributions. This could be through things like:
– Inside knowledge related to healtcare
– Out of the square box creativity and art
– Life experience similar to aging
– Ability to problem solve, do to a daily need to do so
– Entrepeneurial research, leadership and skills
Oftentimes these contributions come from simply looking at a problem from a different angle. And while our bodies might work differently, that does not mean that our minds, ideas or contribution is less valuable.
And then there is the question of accessibility
There is also another aspect not discussed enough;
Because – what if we stopped waiting around for people to become disabled before making workplaces accessible.
Clear communication is better for everyone. Good digital accessibility can help everyone. Quiet work environments can be better for everyone.
The possibility of remote participation can help everyone. Flexible possibilities within a predictable sceduling can help everyone. Ergonomic and healthcare possibilities can help everyone.
And when workplaces are designed with these variations in mind from the beginning, it results in less friction, less discrimination and more possible opportunities – for everyone!
The cost of exclusion
Furthermore, there is also something rather «strange» about the way we talk about accomodations.
We ask «how much will it cost to accomodate this employee?»
But as a society, we don’t ask «how much will it cost to exclude them?»
Most people want to participate something to the society they live in. But when the labour market (in practice) has put a ban on accomodation for certain marginalized groups, and discrimination towards disabled people are allowed to run wild, most of us feel left out.
And, as mentioned earlier – the ILO’s reasearch shows that the employment and wage gap experienced by disabled people, cannot simply be explained away by inexperiences in education, or actual labour experience. Many of us have plenty to offer. Instead, it is the various system(s) currently in place that are unable to recognize it.
And no,
I don’t believe we can do absolutely everything!
With all this in mind, I do still want to be really clear here. Because, I do not believe in the typical aspirational version of disability usually shown online, in which we are told «You can do anything if you believe it hard enough!».
No, I can’t!
That is not me trying to be edgy – it’s (in my case) a litteral, legal fact:
I cannot drive a car; The law prevents me from doing so, due to my epilepsy.
Similarly, a blind person cannot decide that their sight will return just because they want it to. And, someone paralyzed who uses a wheelchair cannot just decide to get up on their feet because they want it.
Can we work towards it (whatever it is) – if such training is possible and avalaibe?
– Yes.
Does said training automatically mean that we will succeed?
– No.
You can only control what you can control.
And at least to me, that is a much more empowering philosophy than pretending my limitations don’t exist.
To (once again) use myself as an example;
– I can control how I treat myself: (eat, sleeep, possible routines and hobbies). I can adapt and develop my skills, ask for help when in need of it. I can take a good look at my actual limitations, and consider which of these are worth pushing, and which are nessesary to just take into consideration.
So, from a more practical side:
1. I can not drive a car (yet), as I need to be without a seizure for at least a year before doing so. And I can not control my (at current), daily seizures.
2. My epilepsy reacts badly to caffeine and alcohol, and my seizures gets worse from it.
I can control what i consume, so that my seizures don’t get unessesarily worse.
This is personal agency. And while my limitations are there, I still believe it’s possible to build a meaningful life, by just building around them.
Perhaps independence isn’t the goal
In a way, this is also why I’ve become Increasingly out of it, in relation to how we speak about independence.
We are told from childhood that beeing successful means needing nobody. Doing everything ourselves. Working full time, living alone and never asking for help.
But human beings were never actually degined that way. We were created interdependent; we need other people.
The difference is that to many disabled people that reality is made much more visible than to others, from a relatively young age.
The Workplace was never really built for everybody
As we are approaching the end of this, I want to preface that I don’t want a future where disabled people are «graciously permitted» to participate in a workplace designed for somebody else.
Instead,
I want something much more ambitious!
Workplaces designed with human variation in mind. A place where fluctuating energy, brainchemistry, health and the general circumstances of life – varies.
As all lives do.
– I want remote work to be an option in professions that doesn’t require office-attendance.
– I want flexibility in scedules to be seen as a working tool rather than a moral failing.
– I want accomodations to be a normal part of work etiquette, rather than a reason for humiliation and discrimination within the workforce
– I want productivity to mean contribution instead of endurance.
And more than anything, I want becoming disabled to no longer automatically mean loosing your career and livelihood.
And for those of us disabled to be able to proudly say «This is what my body can do. These are the conditions I need. And here is what I can contribute» – and to say it with a spine.
The problem has never been that disabled people can’t work. It’s that we can’t work inside workspaces designed without us in mind.
BUT if we were to re-design it, perhaps the same workspaces that were never built for everyone, could become one that is!
__________________________
A small task for you
This week, think about your own ideal way of working.
Not the job title – or even the salary attached to it.
Not even what society claims a «sucessful career» should look like.
Instead ask;
– What conditions would allow me to do my best work?
Write down the first three that comes to mind.
– What would have to change – in me, my workplace or in society, for those conditions to become possible?
You may discover that the life you want isn’t as impossible as you once thought!
– Silje <3