Well, 10 years in to having my own ABN, I’m now running a small team of 9 employees and have a few fabulous subcontractors and other businesses providing support too. I’ve been thinking a lot lately about disability at work because as a person with multiple disabilities work has been a huge challenge for me, and most of my employees have some form of lived experience of disability either themselves or as a carer in their personal lives. Figuring out access needs for all of us is a constant theme in my life at the moment! I’m presently overhauling all my HR documents to make them more inclusive and accessible, it’s so time consuming but also so essential.
I’ve also done a lot of training and mentoring over the years trying to figure this process out. Sadly, most of it has been worse than useless, it’s been so uninformed that it’s done harm. I’ve had to un-learn a lot of what I was taught because it became part of what was holding me back and adding to my struggles. The micro-business for people with a disability cert 3 I did 8 years ago was destructive. Experiences with some (not all) Disability Employment Service Providers was likewise, as were various trainings offered by mentors, business support services, NEIS, and so many other systems intended to make life easier for someone like myself. They almost all floundered on two very simple diversities: poverty and disability. Without a good grasp of those two realities, so much of the material was a poor fit and in some cases seriously so.
I’ve got more confident about walking away these days and in some cases providing feedback. Here’s a de-identified email I sent to a mentoring program I was in a year or two ago:
Just putting down in email some of the things we’ve been talking about. I think XXXXX has a lot to offer me and other medium to long term unemployed folks with disabilities, but some aspects of it are also concerning, stressful, and potentially harmful. My brief rundown is:
- Strong focus on increasing individual capacity
- Wide range of useful methods with a good research base
- Positive approach to challenges’
- Useful overview of the business development processes
- Excellent use of human centered design tools for product and service development
Most of the information is generic and not disability specific, particularly for people who are neurodivergent. (people’s who’s brains/minds work differently from the norm, such as autistic people, those with ADHD, giftedness, brain injuries, mental illness, and so on)
Much of the information is presented in a decontextualised way which is highly risky for people who experience systemic discrimination and trauma (both almost ubiquitous to the disability population) By which I mean things like
- Telling people that empathising with other people groups is easy has the potential to be not only vastly inaccurate but shaming. Many people with autism experience over or under developed empathy in very challenging ways, most people who have been long term poor find it very difficult to empathise with people with money such as potential employers, and generally they lack the intimate access necessary to such people to form it.
- Another example: “You’re not limited in any way if you have internal motivation” which is a cruel set up for shame and humiliation when people discover that in fact systemic oppression still exists and issues of stigma still impact their lives in harmful ways.
- We were told often that habit formation is very easy “anyone can do it, it’s just like breathing!”, whereas difficulty forming habits is a common aspect of ADHD. (for more about this see here) And breathing is an autonomic reflex, not a habit.
- Told that “If we were more outside our comfort zone, we would have more growth and success”. This is risky advice to give to vulnerable people, and there’s a substantial body of research that shows the benefits of safety rather than risk in promoting growth.
- Told that we all lack motivation and struggle to make ourselves do hard things.
- there’s little evidence for any widespread personality deficits in either the poor or disabled communities.
- a quick discussion with the online group revealed the usual more complex relationships with motivation with 2 group members who hyper focus, 2 who find positive feedback distressing, 2 who use negative feedback as perverse reinforcement (common for marginalised communities) and only 1 who found motivation a concern in general. This took about 3 minutes to ascertain.
Quality of the facilitation. AAA is using a ‘mug and jug’ style of education where he the expert passes on information to we the students who are in need of his expertise. BBB is using a more appropriate adult facilitation style that includes more opportunities for reflection and tailoring of the information to the students. For example, CCC in the online group was clearly reluctant to engage and feeling alienated by the focus on positivity. A short conversation with the online group revealed a distressingly high level of job rejection with attendant loss of confidence, social alienation, and personal vulnerability. Without care for this context the information is useless at best and actively harmful at worst, playing into victim blaming dynamics already culturally prevalent for the poor, disabled, and unemployed.
A great deal of the information is inherently contradictory and rather than exploring that it’s being glossed over. For example, we are being told that happiness is the key to success but that motivation is not a feeling and we shouldn’t use feelings as motivation. This is fertile ground for discussion but that’s not being given time. Efforts to discuss are being dismissed as intrusive and needless, making the space less safe for anyone to volunteer information or contradict provided wisdom.
Many of the underlying assumptions about the causes and cures of long term unemployment need closer examination, as does the risk of the intervention itself. The intake materials for the course were based on the readiness to change materials used in drug and alcohol rehabilitation services. They had no data points reserved to indicate that any life domain was currently progressing well. The underlying message was that all aspects of our lives were in need of major changes, and that we were indicating our ‘readiness to give up unemployment’. However the central tenants of the readiness to change model – meeting people where they are at – is not being used. So people like CCC are being put under pressure to grasp the power of positive mindset rather than being offered the validation and grief tools needed to process their history and recover from it.
So far the course has given me much useful food for thought, but I’ve also been told that I am where I am in life because I lack enough empathy, willingness to take risks, self motivation, willingness to make myself do unpleasant things and to choose growth. This is grossly inappropriate.
If you would like to consider your program in a more holistic manner, I suggest the use of Critical Appraisal tools by Rychetnik (see more here) who was one of the pioneers of evaluating unintended consequences of interventions such as yours. I also recommend using frameworks such as Trauma Informed Care (more info here), and social determinants of health to contextualise your information in more appropriate and less risky ways.
I’m not sharing this to shame the program in question – there’s so many out there like this and most are put together by good folks with great intentions. I’m certainly not getting it all right myself either, this is a difficult space and I’m constantly messing up and learning with myself and my staff. I’m sharing to help you think more critically about what we think we know about disabilities in the workplace, and why it’s so crucial to take the onus of access and modifications off the people with disabilities and start placing them back on the employers and services. The burden of having to navigate these things is massive and largely invisible.
Understanding diversity is incredibly important when you want to turn good intentions into actually useful outcomes. If you’re going to be working with people with disabilities, poverty, and long term unemployment then you’d better talk to a few them and do a modicum of research before you start, otherwise you run the risk of simply creating one more shiny, painful obstacle in our lives. It’s absolutely possible to support people with disabilities in the workplace and we are competent, brilliant, reliable, and highly skilled. We can do better about how we do this.
3 thoughts on “Being Disabled at Work”
as usual well-written and well-thought-through, Sarah. The only thing I might want to add is the principles of Lonergan’s transcendental precepts – to run them through your expectations and experiences: Be Attentive, Be Intelligent (=Understand what the matter is), Be Reasonable (I use it to ask: What do my opponents have to say), Be Responsible. There are of course layers to every point. Lonergan was a philosopher of many volumes after all. 🙂
Fabulous reply as always thankyou
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Most places that offer training havent got a clue about what needs disabled people have. I say leave the training to those of us with lived experience, xoxo
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