Researchers and clinicians from The Hopkins Centre, Metro South Health, and Spinal Life Australia explored the experiences of people who have sustained their job with the same employer for at least 12 months following an acquired brain injury (ABI) or spinal cord injury (SCI). 

As part of this Hopkins Centre Seed Grant project, personal employment stories and journey maps were co-created with people with lived experience of ABI or SCI and contributed to by people's employers, colleagues, service providers, or family members. These stories and journey maps highlight the varied and personalised experiences of people who have been able to sustain work after a neurological injury, with a focus on what has enabled or supported them to work over the long term.

Personal employment stories and journey maps

Knut

Knut is a member of the research team for this project. Knut acquired a traumatic brain injury about 3 years ago and has since been able to gradually return to full-time work as a chemical researcher. Knut credits a large part of his success after his brain injury to the rehabilitation clinicians who helped him and their specialist knowledge and hopes that others can access similar support.

You can watch Knut talk about what has most helped him be successful at work after his brain injury in the video below.

 

Zivan

Zivan suffered a stroke over a year and a half ago. One of the side effects of Zivan’s stroke was aphasia, which affects his ability to speak, read, and write. About 8 months after his stroke, Zivan was able to gradually return to his job as a Platform Engineer in Information Technology at a University. Zivan’s wife Michelle has played an important role in supporting him. Click here to download a visual map of Zivan’s employment journey.

You can watch Zivan talk about what has most helped him return to work after his stroke in the video below. Zivan believes it’s important to set goals to work towards after an injury. Zivan says: “You need to take a risk basically, take a try. Just try it and see. If you wash out, fine. But just try it.”

Michelle and other family, friends, and colleagues supported Zivan to rebuild his confidence after his stroke. Michelle says: “Social interactions were a big part of his journey because initially he didn't want to go out and meet people one-on-one or in big groups. Initially I was close by to help him out in certain conversations, but as time went on we reduced my input at the suggestion of the occupational therapist. By about 8 months he said he was ready to go back to work, and he did say that the work was the biggest therapy for him. We’re grateful to his employer and colleagues who just stepped up and helped him. They were always in touch with him, asking him: Is that too much? Are you tired? Do you need extra time? So having him communicate with his boss and manager and human resources, that was important and that that worked well. He has mostly good days now. It’s not quite the same as before, we're not there yet, but I can see he's pushing himself.”

 

Nina

Nina had worked in several industries, including the community sector, when she sustained a traumatic brain injury 3 years ago. Approximately 1 year after her injury, Nina started collaborating with researchers as someone with lived experience of disability. Over the last 2 years, she has worked to establish herself as an advocate for people with brain injuries and has contributed to several research projects. Click here to download a visual map of Nina’s employment journey.

For Nina, it was important to find meaningful activities that gave her purpose after her injury. Nina says: "I didn't know who I was anymore, what I could do, what I couldn't do. But I had spent my whole life working towards causes, and I realised that that's where I needed to be. I want people with acquired brain injuries to have better options than what’s available now. I don't think just having a quality of life is good enough, I want people to prosper and grow and have dreams. So I started off with being a participant in a research project, and they loved what I had to say and kept asking me to do more. It ended up being a very reciprocal relationship where I really felt on an even playing field. For the first time, I felt like I was contributing and receiving as much. Like I was part of the team.”

Nina wants more opportunities for people with disabilities. Nina says: “I want to affect change in policies so that the system better supports people with disabilities and so that there are more inclusive workplaces. I believe people with disabilities are more dedicated than your average worker and have more imagination. Like other people with disabilities, I'm constantly having to think outside the box of how I can do things, and we bring that to our workplaces, and it gives our workplaces new innovations. We have fantastic stuff to offer but workplaces need to change to allow that and adapt to us.”

Nelson is one of the researchers Nina has worked with to create rehabilitation resources for people who have had brain injuries. As a speech pathologist, Nelson believes simple communication strategies are beneficial for everyone in the workplace, not just people with brain injuries. Nelson says: “Everyone's so unique with what helps them.  But I think it just benefits everyone, really, if you're simplifying things. If you don’t overcomplicate things that shouldn’t be overcomplicated and you're presenting things in a simpler manner with less jargon, it just leaves room for more engagement. Creating supportive environments where distractions are minimised to help support concentration and manage cognitive fatigue are also beneficial.”

Getting to know a person and their individual needs is important to finding and using the right communication strategies. Nelson says: “If someone has communication difficulties, it’s important to understand what their communication needs and preferences are. Not every strategy works for every person. Talking too slow or too loudly if you haven’t been asked to can be unhelpful and can negatively impact a person’s confidence in the workplace. Communication partner training is something that should be implemented in all workplaces – It’s not that complex and it’s effective for all types of interactions.”

 

Lindsay

Lindsay experienced a spinal cord injury 31 years ago. At the time, he had just finished high school. After his injury, Lindsay had to take time to re-establish himself and re-set his goals. Almost 7 years after his injury, Lindsay got in touch with Tania, a vocational rehabilitation counsellor who helped him to find work that matched his interests and needs. With Tania’s help, Lindsay found a traineeship with an assistive technology company. It’s been over 23 years since his traineeship, and Lindsay continues to work at the same company in a business administration role part-time. Click here to download a visual map of Lindsay’s employment journey.

Lindsay believes in the value of peer support or connecting with other people who have been able to continue to work after a spinal cord injury.

Lindsay says: “Don't give up. Set yourself a goal and work towards it. Talking to people or peers who have gone through similar journeys and have experience working post-injury can be really valuable. There are some programs where you go into the hospital and speak to people with newly acquired injuries, which is something I do. Just the other day, someone who I had spoken to while he was in hospital said that I had inspired him to essentially get out his laptop and start working again. There are also online groups and Facebook pages that you can join now if you’re looking to connect with other people.”

Tania adds: “It is important to encourage service providers to be aware of peer support options. The value of talking to people who've been there and done it or who are going through it at the same time, like just feeling like you're not alone, is huge.”

Both Lindsay and Tania agree that finding the right service provider is important for helping people who have had an injury find work that meets their interests and needs.

Lindsay says: “I remember talking to Tania, and she gave me all these ideas for different jobs. There was a fair bit of back-and-forth about what was and wasn’t right for me, but we were both determined to do it. I was determined to work, but Tania’s drive to help me find a career and not fail was also important.”

Tania says: “It is so important for that person to believe in themselves and to believe that they can and should be working. It’s about being able to really listen to what your client wants and to help them see the potential that they can bring to work. People might want you to give them job suggestions or ideas. But if they're saying that they really want to do something, then try everything you can to help support them. We've helped people with so many different jobs return to work. Like, you know, farmers and mechanics and engineers and aircraft maintenance workers.

I think we really owe it to people to give them our best every single time. You don't have to know everything or be able to do everything, but just give them your best. And you know, be honest about what you can and can't deliver and what you do and don't know. We can help people change their lives in such a profound way.”

Lindsay wants employers to understand the benefits of employing people with disability.

Lindsay says: “Employers need to be open minded because the rewards that you get long term outweigh any concerns they might have about employing someone with a disability at the start.  Accessibility and inclusion give people more of a sense of community and belonging. You are allowing someone who has a disability to work, earn an income, pay taxes, socialise with other staff – group lunches, going out after work, going for Friday drinks, Christmas parties – and things like that.  Other staff get to know someone else in a different situation and reflect on how they approach work. Employers benefit too. I read a statistic somewhere that people with a disability take less sick days and tend to be more reliable and loyal employees.”

 

Dan

Dan has over 30 years of experience in workplace health and safety. About 10 years ago, he acquired a brain injury (ABI) from a stroke. Just over a year after he acquired his injury, Dan gradually started returning to work. The first week back, Dan did just 4 hours of work. Over the following 16 months, he increased his hours until he was back to full-time. Although Dan couldn't go back to his original job, he was able to find a different role in the same team that better met his post-injury goals and abilities. Click here to download a visual map of Dan’s employment journey.

For Dan, working after a brain injury is about being flexible and open to change. Dan also values the flexibility of his employer, who has supported him in different ways since returning to work. You can read about Dan’s story or listen to it in his own voice.

Dan says: “Brain injury is unusual in that there's not a defined recovery period. Recovery might slow down, but it doesn’t stop. Recovery goes on forever and change is the only constant. One size does not fit all, everyone’s experiences post-injury will be different, and people’s capabilities will continue changing over time.

For people with ABI, it's about maintaining that flexibility in the way you do things, accepting that things will change and working towards your goals. How you’re doing now will be different to how you will be doing in 12 months’ time. It's a long process of constant self-review or constant review of what your goals and capacities are after a brain injury. You have to ask yourself… What are my goals? Do I want to go back to work? How am I going to do that?

Being at work was a high priority for me. And in my mind, at early times, I thought, well, I've got fewer tools to make that possible. So, I had to work to find other tools or strategies that made me valuable in my organisation.

But it’s not just the person with ABI that needs to be flexible, it’s the employer too. It’s important for the employer to consider the individual and their unique goals and capacities. Employers have got to have a belief in you, the same way you have to have a belief in yourself. They have to be flexible in how they support you, because the support that each individual person needs is different.

I can only say that my employer has been great. Although, they haven’t always known what to do with me or how to support me. ABI is really poorly understood. So, it’s also about understanding what brain injury is and the changes or challenges a person with ABI might experience. And then it’s figuring out how to make the best of my strengths or abilities now and in an ongoing way.

It's important to challenge perceptions of people with ABI at work and in the community. Employers need to expand their horizons in terms of how they think about and treat people who have had a brain injury – it’s not just a physical injury. People with ABI can work and be involved in their communities.”

Emily* has worked with Dan for the last 4 years in different ways, including as his manager. As a manager, Emily believes it’s important to challenge perceptions of what someone can do after an injury. Emily says: “Just because someone has had a brain injury doesn’t mean they're not capable of work. It might just mean that they need different support. I think it's important that employers have that open mindset when thinking about what returning to work looks for someone after an injury, particularly if it’s someone who's already been your employee. It’s important to be open and to explore what the options might be for someone to return to work rather than write them off.

Policies around inclusion and reasonable adjustments are important. If you don't have good strong policies that encourage inclusive thinking, then people aren't going to necessarily go out of their way to make reasonable adjustments to reduce barriers to work for people.”

*Emily is a pseudonym.