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The journey to becoming a CEO while living with a disability

Member and CEO of the Specialist Disability Accommodation Alliance, Jeramy Hope CPMgr CMgr FIML, shares his story about grappling with a disability diagnosis but refusing to let it slow down his career journey. Jeramy shares five tips on how to help people with a disability in the workplace.

I always dreamed of a world of equality, believing that it’s not difficult to imagine what could be.  In leadership, showing empathy, being true to yourself, and leading from an ethical framework are critical. In over 25 years of people leadership, I’ve always wanted to do what is right and fair and find ways to extend our view beyond our boundaries; to open our doors and dare to look outside. My days are now spent seeking ways to find our next leader and the next person who needs that little extra help.

Leadership was a natural progression from volunteering to paid employment. During this time, I have always wanted to ensure people with disabilities had a voice. My first task as a leader (at the age of 22) was to interview, collate data and research a person with a disability for a presentation to the Board of Directors of a large NFP on what direction the organisation should take for the next five years. That sent me on a path of enabling people’s voices to be heard – working in aged care, youth work and mainly the disability sector.

Close to home

In 2010, my perspective on leading people with disabilities changed. At that time, my daughter was diagnosed with a disability, which made me realise that I had often made assumptions about how to support and engage with people with disabilities. This experience at home challenged the way I led at work every day. I had always considered myself an expert in supporting people with disabilities and leading person-centred teams practising servant leadership. Still, this personal experience gave me a new and deeper understanding.

I promised not to make assumptions and always to provide time for a person to have a voice. I also committed to taking the time to understand how to adapt or adjust the environment to make it easier for a person with a disability to be heard and, most importantly, to be understood. During this time, I first learned about assistive technology and how limiting it can be if we don’t deliberately inquire about what people need to succeed at their workplace or the equipment that will enable them to do what we often take for granted.

My own journey with a disability

In 2016, I experienced a significant life change when I was diagnosed with a degenerative disability. It has taken me some time to come to terms with this. I now understand that it will have a lifelong impact on my life. However, fast forward to 2024, and I see my limitations as an opportunity.

Having a disability should not be a barrier. With the proper support, accommodations, acceptance, and increased awareness in the community, people with disabilities can achieve anything. It has been a process to accept my permanent disability, as I spent the first eight years pretending to be ‘normal’ rather than being honest with myself and seeking help. I now realise that I can no longer ignore or hide my disability as I navigate through home and work life.

At that time, I had around 350 staff who I interacted with daily. As a team, we supported people with disabilities, striving to enhance their lives and provide them with equality and a place in society. The work we did was exceptional and incredibly rewarding. We looked for new ways to use tools, design, support, and therapy to assist people in a housing environment. I was an expert at helping others, providing support and flexibility, and making reasonable adjustments. However, I was hiding my own disability, which made it hard for me to fully lead the team and understand the importance of taking time to recharge.

Being a person with a disability provides me with a unique position that enhances my ability to understand, lead, and offer a unique perspective on the rights of persons with disability, including having a voice regarding access and inclusion, public policy, and leadership. With my increased passion for disability advocacy and the need to ensure I could be a voice for better outcomes, I started looking for new opportunities.

The sky is the limit with the right support

I was proud to be appointed as the CEO of the Specialist Disability Accommodation Alliance in January 2024. This symbolises that disability does not, and should not, be a barrier that limits anyone. Through assistance (when needed), adjustments, acceptance and raising community awareness, the sky is the limit for people with disabilities. In the first instance, the barrier was me, but at times, ignorance is. This is where we as leaders should offer help respectfully on the importance of access and inclusion.

For context, it takes over 23 hours of NDIS support per week to enable me to maintain my baseline. This includes five to six hours of physical therapy. However, this type of support enables me to maintain a career and a job that is a true vocation.

How to support people with a disability

I have learnt a few valuable lessons that I take with me every day as a leader. Hopefully these help you in understanding how to support a team member dealing with a disability or a new diagnosis.

1. Rest and recovery are vital

My previous expectations for myself and my staff were always to provide 100% effort and be constantly available, which is unreasonable and unsafe. I now understand the importance of rest and recovery. It’s essential to allow time for recovery, especially after big projects or busy periods. I’ve been exploring the concept of ‘pacing’ and learning to be flexible with my fluctuating energy levels, increasing and decreasing as needed. I’ve come to understand that it’s unrealistic to continually be operating at 100%, as you never know when you’ll need to adjust and adapt. This can apply to anyone, not just those with a disability.

2. Embrace flexibility

Leadership should allow you to be present, understanding, and practice flexibility. I have learned that people, as we saw through the pandemic, are adaptable, capable, and able to work in environments with minimal supervision. I have also learned to trust and empower my team.

3. Be vulnerable and honest

As a person with a disability, I have needed to be flexible as a leader, build a team with a shared understanding and trust, and create a supportive environment. On difficult days, I am honest with my staff, and when necessary, I explain aspects of my disability. This gives context to the ‘why’ behind certain situations.

4. Respect is key

I have realised the importance of trusting my team. I’ve learned that trust should be reciprocal and that we should all support each other, not just the CEO or people with disabilities. Mutual respect is crucial to everyone’s growth and development.

5. Mutual safety

Finally, there needs to be a culture of mutual safety. Everyone should feel encouraged to ask for help when needed, just as I have needed to learn.

I am learning to listen to my body, to know when to rest, and understand my limits. I have learned that this is one of the most valuable lessons to pass on to my staff, whether they have a disability or not. This can only occur in a team that:

  • has instilled trust.
  • can be honest.
  • has a mutual understanding of what is reasonable.
  • embraces the adjustments that people require.  
  • works together to facilitate accessibility support (whether government funded or not!).

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