By Associate Professor Des Graham, President, MS Australia
A new workplace and employment survey has provided further evidence that too many Australian workplaces are failing people living with Multiple Sclerosis and other health conditions, and falling well short of community expectations.
Anecdotally, we already knew that people with MS have experienced stigma in the workplace and issues retaining work. As the Chair of MS Australia, it’s an issue I am well versed in. And as someone living with MS, an issue I have myself navigated.
MS Australia commissioned the ‘Employment and Workplace Survey’ to gain further insights into the experience of people with MS and other health conditions.
Half (52%) of people living with MS report missed work opportunities. More than a quarter (28%) of those with MS were uncomfortable in the workplace because they felt people labelled them.
And while most with a health condition (four out of five) felt they are treated equally as a full team player and feel supported, half of those living with MS (52%) said they had missed out on opportunities at work due to their condition.
With our Survey findings showing 83% of the general community believe people with health conditions are just as capable as they are when it comes to working, and that 85% believe workplaces are more receptive now to adapting roles to better fit their employees, there is a frustrating disconnect between this general expectation and beliefs, and the lived experience.
Our work frames and shapes our place in the world. For many, the workplace is a second home and provides a sense of belonging together with meaningful opportunities to collaborate and learn.
It should be no surprise then that employment can make a huge difference for those living with multiple sclerosis. Many people live and work well with MS, often helped by a disease modifying treatment that reduces the risk of relapses and disease progression.
Experts in MS and employment at Monash Business School, Monash University, Associate Professors Pieter Van Dijk and Andrea Kirk-Brown tell us that although early and effective symptom management for MS is helping people to stay at work longer, there are a growing number of employees who feel vulnerable and insecure in their employment.
We are now calling for an end to concerns with disclosure in the workplace for those living with MS and other health conditions.
We are also calling for urgent action to improve workplace culture, practices and attitudes. We want to see the same opportunities in employment and the workplace afforded to people with MS and help employers, employees and colleagues create a fulfilling work environment.
Flexibility and education are key and on behalf of the MS community we are calling for flexible work options; workplace infrastructure adjustments and safe, accessible spaces; more education and understanding of MS to combat stigma; and a focus on more diversity in employment and the workplace.
The ‘Employment and Workplace’ Survey findings also highlighted positive experiences of those living with MS.
That 88% in the MS community say flexible working conditions (including working from home) make a positive difference to work-life balance for those with a health condition, is telling. Flexible working practices are a major win for our community. The MS community firmly believe flexible working options (88%) and workplace infrastructure adjustments (71%) will make the working world a better place for those living with a health condition.
And we were heartened to find that for a significant proportion of those living with MS who disclosed their condition at work (88%), something positive happened following disclosure, with three in four (76%) feeling more able to be their authentic self at work.
According to the experts in workplace and MS, those that have disclosed stay in work longer. They get to manage their symptoms at work with the support of their workplace and their colleagues.
For me, this is key.
Let’s find a way to ensure people with MS and other health conditions do not have to fear that disclosure will jeopardise career prospects, result in termination or make their workplace experience unsustainable and unbearable.
Let’s encourage supportive action by employers following disclosure. We need to smash down the stigma wall, so that people feel comfortable speaking up about their condition and the support they need as a result.
We really need to be doing a much better job empowering those living with health conditions and providing more equitable work conditions and career opportunities.
Put bluntly, employers need to go further, faster.
This year marks the 50th year of MS Australia, an organisation formed to drive awareness, research, and support for people with multiple sclerosis (MS).