Neurodiversity: 'No hope' labour

Most of us want to be employed and recognised for the skills and talents we possess. No-one wants to be treated in a tokenistic fashion... or felt sorry for!

You may say that I'm a dreamer But I'm not the only one I hope someday you'll join us and the world will be as one”

―John Lennon,Imagine

I am an optimist and I have worked in the area of neuro-inclusion and equity for more than 30 years and continue to champion this as much today as I did at the start of my journey.

This week my company, Do-IT Solutions was short listed for a the British HR awards and this is wonderful being recognised and I am very grateful and congratulations to all the other worthy finalists.

This week I want to discuss a 'touchy' subject. Even at my stage of my career I feel anxious writing this... but I know it is important to 'call it out' especially as we are approaching Celebrating Neurodiversity Week which is often a wonderful opportunity to showcase what is good that is happening in a wide range of settings.

In recent times there have been discussions among the ND community about the need to be paid if they speak about neurodiversity in general or when telling others about their own lived experiences.

I know we all do 'something for nothing' often in the hope it may lead to more work. However it can be really difficult when you lack confidence to ask for payment at any stage for services that you are providing when you feel vulnerable too.Poor past experiences may change how we behave. This may lead to a real cost- time, travel costs, fatigue... that may not be considered

No-one wants to be pitied or feel like they should be pleased and feel they should be honoured to be given an opportunity to speak.

Even at my age and stage of my career it can feel difficult discussing this which makes me think about writing about it and how this is sooooooo hard for many people....

Hope labour

"Hope labour" is a term that's often used to describe a kind of work where people invest their time and effort without a guaranteed payoff, but with the expectation—or hope—that it will lead to some kind of reward in the future. Think of it like planting a seed and nurturing it, even though you're not sure if it will ever grow into a tree. This is especially common in the digital age, where people create content, write blogs, make videos, or build a social media presence without immediate compensation.

The idea is that by putting in this "hope labour," you're building something that might catch the eye of an employer, gain you followers, or open up new opportunities down the line. You're essentially gambling your time and skills on the hope that they'll pay off in some form—be it money, reputation, or careers.

It's like buying a lottery ticket; the chances of winning are small, but the allure of a big payoff can be too tempting to resist.It can be a double-edged sword, especially for someone considering themselves as disabled or for neurodivergent workers.

For some the lack of immediate compensation and uncertainty relating to future rewards can make it exploitative.

The painful reality is that ND people have often have faced challenges in finding stable employment due to societal biases and lack of adjustments being put in place. Self esteem and confidence may be low. The confidence seen may not show the reality of the waggling legs below the surface just to keep afloat.

The appeal of "hope labour" as a way to break into a field can be particularly strong because it seems to offer an alternative pathway to success. Neurodiversity seems to be a 'hot topic' and I hear people saying they want to work in this 'sector' (!)in a way I did not even 12 months ago.

However, this can lead to situations where a person can invest a considerable amount of time and effort with no guaranteed return, potentially worsening their economic vulnerability and impacting on their mental wellbeing.

Some employers or platforms might capitalise on this vulnerability, consciously or unconsciously. Knowing that neurodivergent individuals are eager to prove themselves, they may be more likely to offer opportunities framed around "exposure" or "experience" instead of proper compensation. This essentially asks these workers to gamble their already limited resources on a highly uncertain outcome.

Also the isolated and non-standard nature of many "hope labour" opportunities can make it harder for neurodivergent individuals to advocate for themselves. There is difficulty also collectively bargaining. This may weaken the person's position further, making it easier to be exploited.

Challenges of speaking for 'free'

Being part of an underrepresented group and being asked to speak or work for free presents a unique set of challenges.

1. Emotional labour: Neurodivergent folk are often expected to share personal experiences or offer insights into the challenges faced by their 'tribe' and this can be really emotionally draining, yet this emotional labour often goes uncompensated. Once you have told your 'story' you can't take it back and it comes with risks of people changing how they see you. I have spoken in another newsletter about psychological safety as well.
2. Expertise devaluation: being asked to speak for free can send the message that one's expertise or perspective is not valuable enough to be paid for, even though these insights are sought precisely because they offer a unique viewpoint. There is a feeling that you should be pleased to be offered this opportunity.
3. Time is money: preparing a talk, going to pre-meetings, preparing a handout, attending an event, or participating in a panel discussion takes time. This is time spent on unpaid work and not spent on income-generating activities, which can have a bigger impact on people already facing economic challenges.
4. Perpetuates inequality: offering free work can perpetuate systemic inequalities by essentially making it more difficult for underrepresented groups to advance professionally or financially. Those who can afford to speak for free often come from more privileged backgrounds, further skewing representation.
5. The "token" problem: there's also the risk of tokenism, where an individual is invited to speak solely to give the appearance of diversity and inclusive practices taking place. This can undermine the person's credibility and devalue their contribution.
6. Pressure to represent: I have seen neurodivergent people feel an undue burden to represent their entire community. This is unrealistic and an unfair expectation that can add stress to the already uncompensated task and some people who may be more vulnerable to mental health challenges.
7. Opportunity cost: engaging in unpaid work means missing out on other opportunities, whether it's other paid work, professional development, or even personal time. for people who are already facing hurdles in their career paths, this opportunity cost can be particularly detrimental.
8. Erosion of professional standards: if a culture of unpaid work takes hold, it can degrade the perceived value of that work for everyone in the field, making it harder for anyone, including those from well-represented groups, to earn a living wage.

When you next ask someone to speak... or you give someone (with good intent) a work placement opportunity do consider what this really means...for you and more importantly that person! Value the person for the skills they are providing. At the same time that person needs to behave professionally too and deliver what they have promised.

Blog Author

I am Amanda Kirby, CEO of?Do-IT Solutions?a tech-for-good company that delivers thought provoking consultancy and neuroinclusive guidance and training. We have developed cutting edge web-based screening tools that have helped 10s of 1000s of people. We strive to deliver person-centered solutions relating to neurodiversity and wellbeing.

I am a mixed bag of experiences and skills, an odd ball... and have 25+ years of working in the field of neurodiversity.

I am a medical doctor, Professor, and have a Ph.D. in the field of neurodiversity; parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself.

Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work?Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce. My 10th book came out called?Neurodiversity and Education?last year. Excitingly, Theo and I have another book coming out next year!

Ref: https://journals.sagepub.com/doi/10.1177/0018726720940777