Have you ever faced a challenge that seemed almost impossible to overcome? Our stories, especially those that detail triumph over adversity, have the remarkable ability to uplift, inspire, and spark positive change.
This is certainly true for me, Jacob Darkin. Here, I'll share my story of recovery from a spinal cord injury and how it fueled my passion to advocate for better healthcare.
Throughout this journey, I've learned that sharing our experiences can create a ripple effect. By speaking up and telling our stories, we empower others to find their voice and get the healthcare they need and deserve.
My Story: A Life Redefined
The most important part of my story is that I’m a father. I have a 7-year-old daughter called Chelsea who’s a bundle of joy and the centre of my universe.
I had a spinal cord injury back in 2019 when Chelsea was still a baby, which meant I had to manage being a parent at the same time as learning to live with my injury.
Until then I had been active and led a very physical life. I was a runner and worked in construction, but suddenly found myself lying in a hospital bed 24/7.
For people who suffer the spinal cord injury that I did, it’s common to be in bed and on a ventilator for a very long time, perhaps the rest of your life. The doctors didn’t tell me that at the time, which was important. It might have convinced me that the rest of my story was already written.
In the moment that I broke my neck, time slowed down. I knew straight away that I had a long road to recovery ahead.
Within a few days I had set myself a challenge of making a physical recovery of 85% and learning to walk again. I knew it would be tough, but I felt that if anybody could rise to that challenge, it was me.
The Road to Recovery & Finding My Voice
After 9 months of recovery and rehabilitation, I had learned how to walk again. I can ambulate but choose to use a wheelchair because it helps me get around and manage my fatigue. It’s a tool, no different from a scooter or a skateboard.
Reaching my recovery goal wouldn’t have been possible without being vocal, which enabled me to advocate for myself and get the support and treatment I needed.
This wasn’t always easy. When I was in hospital my lung capacity was reduced, which made it physically difficult to talk. But I knew that if I didn’t speak up, I wouldn’t get the right level of care. The squeaky wheel gets the grease, as they say.
I realised then that for anyone using the healthcare system, having a voice is crucial. It doesn’t matter what your physical or cognitive capabilities are, so long as you can articulate your needs.
It was at this time that I realised I wanted to become an advocate and ensure as many people’s voices were heard in the healthcare system as possible.
Overcoming Communication Barriers in Healthcare
In recent years, I’ve been involved in a lot of consultancy work within the healthcare space. I dedicate my time to helping businesses, organisations and influential people improve the services the sector offers.
Back when I worked in construction, I would have only gone to the doctors if I stepped on a rusty nail. As far as I was concerned, every doctor was the same, and I just accepted the service I was given.
Now, as someone who has been through the healthcare system extensively, I realise that every interaction you have needs to be a choice. You need to feel empowered and able to make decisions about the care you receive.
We’re currently transitioning from a medical model in which healthcare is prescriptive, to a person-centred approach whereby people’s individual needs and goals are the biggest priority.
Technology has an important role to play, enabling people who might have difficulty communicating to express their thoughts about a course of treatment and self-advocate.
There are all kinds of people in the world. Some people are introverted, some people have hearing difficulties, some people are neurodivergent. It’s crucial that we find ways to communicate efficiently and effectively, to ensure everybody’s healthcare aims are properly acknowledged and their dignity is maintained.
In my view, breaking down communication barriers is one of healthcare’s most important challenges and biggest opportunities.
Advocacy vs. Activism
As a changemaker in healthcare, I want to ensure that people living with communication difficulties, who make up a large percentage of the population, can share their stories and have their viewpoints heard.
By sharing my experiences about the importance of speaking up and articulating my care needs, I’m able to use my story to advocate for others.
As an advocate, a person might collaborate with an organisation that they feel invested in to help it better serve the community. This could lead to small changes that benefit everybody.
At other times in life, a person might be an activist. An activist is looking to make social change, normally focusing on human rights and a belief that all people deserve to be treated equally and fairly. Being an activist is an emotionally charged process that takes a lot of energy.
I needed to be an activist in rehab because they didn’t have equipment in the spinal cord unit to help people exercise their legs. There seemed to be an assumption that people with spinal cord injuries might not have the strength or function to do leg exercises.
In the end, I had to get permission from the healthcare manager and a special healthcare plan just to go over and use the equipment in the brain injury ward.
I went back to the rehab centre a few years later and they were proud to show me they had installed a multi-million-dollar assistive technology gym. I thought to myself ‘I wonder how that happened!’. It was a strong reminder that speaking up and sharing a singular viewpoint can have a ripple effect.
Raising Awareness for an Invisible Disability
These days, I’m also an advocate for an invisible disability; a superpower called attention deficit hyperactivity disorder (ADHD).
I was only recently diagnosed with ADHD by a psychologist when she asked about my story and found out I suffered a spinal cord injury by attempting a front flip, which is an avoidable risk-taking behaviour.
I recently came across a peer reviewed study that found people with ADHD have a life expectancy 13 years less than that of a neurotypical person. I realised that society could be doing more to normalise ADHD, increase awareness and reduce the risks of living with this widespread disability.
Now, I regularly post on LinkedIn to share my story about ADHD and generate awareness. By having honest and open conversations about ADHD, or any other disability for that matter, it removes the stigma. When living with a disability is destigmatised, it becomes much more likely that people will seek out the care and support they need.
The Power of Real-Life Stories
So, what does all this mean? It means being an advocate is not only impactful, but also quite easy.
Just by talking about our real-life experiences in an open and authentic way, we can create a more inclusive society. It involves being honest and a little bit vulnerable, so other people feel comfortable sharing their experiences with others. It’s all about finding strength in numbers.
Luckily, exchanging our real-life experiences comes very naturally to us. We’re all storytellers and we live in a network of stories. There isn’t a stronger connection between people than storytelling. We need to recognise the strength of that bond and use it for the right reasons. Our shared experiences should be a common ground that brings us closer together and helps us solve problems collectively.
Remember, the stories we choose to share and how we choose to share them literally make the world what it is. If we want to shape the world for the better, we need to speak up, speak honestly, and listen to others with all the empathy and respect we would want to receive in return.
Your Story Deserves a Happy Ending
At United for Care, we believe everyone deserves to live a full and rewarding life. Our Supported Independent Living program puts you in control, offering the support and flexibility to create a life you’ll love. Whether you're new to the NDIS or ready for a change of SIL provider, we're here to help you write your next chapter.
Ready to redefine your story with United for Care? Take the first step towards a more independent and fulfilling life. Contact us today for a friendly chat and discover how we can support your NDIS goals:
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