Featured image description: White text on a pink background that says: “Why the World of Work Must Eradicate Systematic Ableism to be Truly Inclusive”. On the right is the a logo for the blog ,”Trans Autistic Feminist” (a gold neurodiversity helix on a black trans symbol) with the blog name in purple.
Content warning for: systematic ableism, internalised ableism, discrimination, subminimum wage, abuse mention
Over the next few months on this blog, there is going to be a recurring theme. Namely about moving into adulthood as a disabled person, which put it lightly is fraught with barriers. Many of these barriers are unnecessary and put on by society even when they don’t know it. An excellent example of this is the world of work. I’ve blogged in the past quite positively about the world of work – especially as last autumn, I did manage to hold a full-time role for seven weeks before my employer let me go. I was let go due to my circumstances combined with the position being unsuitable for me and resulting concern for my mental health. I should never have been there in the first place. The background info is relevant as my experiences there (alongside hearing other stories from other people) are what has led to a shift in perspective.
While I do believe there are genuine employers out there who try to be as inclusive as possible, the the problem is that the entire model of the world of work as is systematically ableist it needs to be completely dismantled and rebuilt. Because as it stands, genuine inclusivity will not be possible. Also, before I continue, this article is not about disabled people who cannot work at all, even with accommodations. Because those people exist and governments should be supporting those people properly, not forcing them to work when this is not possible. It is about the majority of disabled people who can work, but the world of work makes it inaccessible so are forced out. Here are some examples of this:
It punishes those who cannot work full time
The more hours somebody can work, the more they’re paid. Employers and governments alike place full-time work as an arbitrary requirement for people to earn a living. This usually means eight hours in the workplace with daily commutes five days a week. Anybody who cannot do this for any reason will struggle unless they can claim social security or live with other people who can support or limit living costs. This is what forces vulnerability onto people, putting them at risk of abuse.
All can think as to why is because employers will simply refuse to pay people full-time wages on part-time hours unless they are roles higher up the career ladder. This is because capitalists can frame it as a “reward for your hard work.” The fact there are part-time jobs on full-time pay restricted to senior, more experienced people supports this. It is ableist as it relies on the flawed idea that if people “work hard” to elevate through the ranks, they will be “rewarded” with something that for disabled people is an accessibility need – reduced working hours. Usually, it’s advertised by employers as a fringe benefit so that people can “relax” or “spend time with their family.” But for many disabled people, it is actually “have time for allocated support services” or “recover from a meltdown, flare up and other symptoms.” Said “fringe benefit” in this instance is essential for having an autonomous life.
This reminds me of the time I asked for advice on finding a “work from home graduate job” only to get told about requesting it as an accommodation and other implications that relies on the goodwill of employers. In other words, what many disabled people need to work any level job didn’t exist – even though it should. The same applies to part time hour work that pays a living wage by itself.
We can’t work hard in impossible situations.
It punishes those who need to seek regular support
Many people need to have medical appointments for things like therapy, as well as social care support. It can be a minefield negotiating the time off with an employer, especially when unconscious vbias or insist on people using holiday hours or something similar. It means people Ely on employer goodwill as disclosure can be used by the employer to “manage out” employees.
The solution for many disabled people is to work part time around appointments so they don’t have to tell the employer anything. Additionally, support services mostly only operate on weekdays, implicitly pushing the idea that people who need support do not work full time or at all, so will be available for said appointment. The same also applies to social care. It essentially means we are forced out of the highest paid, influential jobs all because we have additional support needs through no fault of our own. It’s a punishment that makes accessing services even harder. All of the above is compounded by daily commuting, further increasing burnout and restrictions especially in rural areas.
We can’t access support in impossible situations.
It punishes those who can’t network for any reason
The world of work isn’t actually about what skills people have. Sure, training plays a part for specialist roles, but to ableds it comes down to how good people can professional relationships (whatever they are). I can’t define it properly as I don’t understand them properly myself because I’m neurodivergent, which therein lie the root issue with the world of work’s reliance on networking.
If you don’t have the skills, ability or understanding for networking is you will be at a disadvantage. The simplest way I can define networking is “the ability to conform to an arbitrary standard set by the neurotypical, privileged majority in society. This is to build rapport with people to help support each other as colleagues and further each other’s careers.” The world of work subtly discriminates against swathes of groups as a result, but especially towards neurodivergent people.
Neurotypicals do not explain networking adequately. They don’t explain the building blocks so that people who need extra support to understand can do so. It also means anyone who makes social mistakes or good faith approaches outside of the accepted standards risk being glossed over for jobs, or even worse, bullied and blacklisted.
It also applies in jobs too, such as setting unreasonable expectations by not helping the neurodivergent person understand how they should respond to situations. An excellent example of this happened at my last job. I was told I did not “show initiative” when dealing with queries when actually I could not work out the expected solution to very ambiguous situations. I’m autistic so unless I was told what to do, it was impossible. This is the case in a lot of customer service roles where pleasing the neurotypical majority is paramount. This is regardless of what mistake they made (such as not following procedures, or when famous or important people are involved).
Again, we cannot communicate in impossible situations.
It contributes to damaging mental and physical health of workers, even when employers act to try to protect it
The damage the workplace does to disabled people is real. This is even when employers are well-intentioned but ultimately fall short of understanding how the world of work they operate in is exclusionary. For disabled people, the world of work is a lifelong uphill battle as little barriers pop up very day that cannot always be overcome or managed. Eventually, the damage builds up to a point where they have no choice but to stop working. Disabled people notice these things in ways even the most genuinely inclusive employers don’t. That’s why employers need to listen to us.
Employers are so used to the existing system; they want to continue with said system, not knowing what alternatives are out there or fearing what alternatives to put in primarily due to believing myths or not wanting to threaten profits. Even those that do go above and beyond still put said constraints in place mentioned above, meaning there is still a glass ceiling stopping disabled employees from fulfilling their potential. This is one reason why employers routinely denied homeworking until COVID-19 forced employers to put it in place for ableds.
The physical and mental harm is still there and is still done, but employers and politicians alike will often blame the individual, rather than the system they operate in. Yes, some jobs truly aren’t appropriate for some disabled people despite accommodations (such as my previous job), but this isn’t the case for everyone. Thus, it should not be used as a blanket excuse to not address the existing model. Even if they let us go out of genuine concern for our health, the damage is done.
We can’t protect our health in impossible situations.
Many disabled people reach an impossible choice, that current initiatives do not address
The world of work has a lot of initiatives for disabled people, which have gone some way to improve the conference and employability skills of many typically shut out of work. I have accessed some of this support in the past and they helped me greatly improve my skills and become better able to work. I am grateful to the good support that I accessed and do believe they are valuable and for any disabled person reading this – it is worth engaging suitable schemes. I continue to do this now.
However, most, if not all, omit a major shortcoming. Many schemes I’ve engaged prepare many disabled people towards full-time work even though many like myself will later find out that they cannot do this. There is no support on what to do if you are disabled and want to/have to earn a full-time income but can’t handle the world of work. Anyone in that gap is basically on their own or are told the usual accommodation stuff. It is still about trying to help disabled people adjust to an existing system that for many is impossible. This is one reason many employers struggle to retain disabled employees.
That said, some schemes are in bad faith, such as sheltered workshops, that force disabled people (usually with higher support needs) to work for the subminimum wage where there is no chance of career progression or independent living. I have no personal experience with this, so I will leave links to some further reading about this – one from the United States and another from Germany.
The message the world of work implicitly sends is that of abandonment. It’s telling us that there is support out there, except disability support that emphasises autonomy and getting an sustainable income without being exploited by the employer or the state is tough to find. Additionally, hoping employers agree to accommodate support needs is not acceptable, when in reality they can easily discriminate by claiming the accommodation requests aren’t reasonable and get away with it.
It means many disabled people are put into a position where there is no easy way forward and said support initiatives did not prepare them for, which can further damage mental health. To paraphrase the words of somebody else I spoke to recently who is in an equally tricky situation (which I think sums it up perfectly):
“The world of work forces disabled people to make a choice between their career and their independence.”
We shouldn’t have to sacrifice either under any circumstances.
The following are what many disabled people do
For those who choose independence, this often means going self employed, freelance or only look for remote working jobs. It means that we can curate our environment and schedule to our needs while also working towards an income we can live on. This can take a while so is risky; however, getting passive income in particular can pay off in the long run as it reduces required working hours. For others, this means having to leave work altogether, which puts them at the mercy of governments to actually give them the money they are entitled to live on. Many disabled people cannot work even if the system changed, but so many more could. And we want to.
I imagine a lot of disabled people who choose the career option do it for one of two reasons – the first is internalised ableism like the myth of “overcoming disability.” The other reason is that their circumstances mean they’ve got no choice. One example is that they have no social security, so they have to work, even though they know this is harmful. Usually, people that choose the career option sooner or later have to revert to the independence option after their health declines, or they get let go.
What are the solutions to this?
Firstly, any solution should focus on prioritising the autonomy and human rights of disabled people, as by doing so this physical and mental health damaged is reduced or eliminated. This is to help avoid situations for disabled employees like I described in the last paragraph. It will also indirectly benefit abled as well.
This means many of the fundamental ideas that underpin the world of work need to be demolished entirely and changed on a structural level. Some ways (both on an organisational and legal level) include:
- A shorter working week so that many disabled people can work said hours without losing pay or having to request accommodations
- Move to remote working more often, as well as making home working standard or a legal right where possible (and it is possible for the vast majority of office jobs – I wrote a whole article on this)
- Set out unwritten social rules and expectations – ie. Written down and frequently updated.
- Change expectations to become more friendly to neurodivergent people. To go back to the ambiguity example, instead of trying to people please neurotypicals who don’t follow proceedures without a good reason, enforce them. Eventually, they will get the message as the customer is not always right and the disorganised, last minute nature of many neurotypicals is detrimental to the welfare of neurodivergent staff
- Make specific holiday time available for those with specific needs without dipping into the default holiday time. Such as allowing extra holiday for weekly counselling appointments, social care chunks as well as for essential healthcare (like appointments at specialist clinics).
- Outline alternative pathways to employment to disabled people clearly, to avoid them being having to choose between independence and a career.
- Emphasising the world of work’s failings to accommodate to prevent internalised ableism
- Encourage people to financially support disabled people who go self employed like what happens in social justice circles
- Push for structural change, so more disability-friendly practises are enshrined in law for everyone, not just as an accommodation that has to be requested and can be denied.
- Abolish sheltered workshops.
- Universal basic income – this was trailed in Finland with positive results
- A progressive tax system.
- Higher corporation tax
- Read more articles from disabled people like this one
Overall, the world of work needs to go further to be truly inclusive. This is because accessibility benefits everyone regardless of ability – improving the quality of life for everyone while making the impossible possible for a significant chunk of the population.
Even if it means we earn less money in the long run, we have to choose our independence over a fulfilling, high flying career. This is because it is no good having a job if it is slowly destroying somebody’s physical or mental health – thus sabotaging somebody’s autonomy and therefore independence. In that scenario, it is better not to work.
As someone who has hit said independence vs career choice over the last 12 months, what you have just read is what I have taken away from it. I don’t know what I’ll be doing now work-wise but I do know one thing – no matter what happens, I will find a way forward. To any other disabled people reading this, that applies to you too.
P.S. If you enjoyed this post and have the financial means to do so, please consider sending a donation to me on my Ko-fi to help me stabilise my life and start my medical transition. If not, no worries. Thank you so much for reading!