The presentation takes an in-depth view of my journey with a non-visible dynamic disability and how it affects my daily life. It is aimed at audiences with an interest in personal lived experience and is tailored to the type of group in attendance. It includes real-life situations and the opportunity to participate in a question and answer session at the end of the presentation.
Content is flexible to include, as appropriate:
How a long term illness became an acquired disability
Centrelink experiences
Disability employment provider experiences
Workplace case studies
The effects of disability and ageing
Accessing disability services after the age of 64yo
The advantages and pitfalls of support groups
Overcoming discriminatory practices and gaining confidence
Challenges specific to non-visible disability
Coping with a major setback, following a remission
Other content tailored to a specific audience group
The information content below presents a sample of my experience.
Contact me at john@badwater.com.au to arrange a phone or video call to discuss the presentation format, availability and fees.
Personal Journey with Non-Visible Disability
Aware
September 1984 – travelling between Sacramento and Reno
Sudden onset flu symptoms without fever
Continued for several months
Main symptom was cognitive dysfunction
Likely cause was retrovirus
Symptoms reduced over several years
I remained undiagnosed until the (northern) winter of 1988. After successive colds and bronchitis, my GP told me that I had an untreatable immune system dysfunction.
Improvement
I moved to Australia in the late 1980s. My health had improved, with only minor setbacks, usually following viral infections. I worked long hours as an accountant, but found time to socialise and participate in exercise classes at gym.
In 1992 I contracted the Epstein-Barr virus and experienced Glandular Fever, during which I was confined to bed.
Post-Viral
Three months later I still I had symptoms of Glandular Fever. My immune system dysfunction was preventing me from recovering. I returned to work, but could no longer exercise.
My health deteriorated further and my employer terminated my employment. I moved to Sydney where I was misdiagnosed by a GP as having a psychiatric disorder. A psychiatrist overturned this diagnosis. The GP then referred me to a haematologist who ran extensive blood tests, and diagnosed me with an untreatable immune system dysfunction, which was the same diagnosis a GP had made seven years earlier.
Disability Support Pension
I applied for the Disability Support Pension on three separate occasions. Each time, my claim was denied. One one of those occasions I didn't pursue it as I was able to exist on my partner's earnings and eventually return to work.
- Applied in 1995. My claim was rejected three times and I eventually went to the Social Security Appeals Tribunal in NSW. Centrelink's decision was immediately overturned by the panel at the hearing. Centrelink did not appeal the decision and I received a retroactive payment to the date I lodged the claim.
- Applied in 2009. I attended an assessment interview. My claim was denied, partly due to a mistake made by my treating doctor on the medical form.
- Applied in 2023. My claim was denied and I requested a review. After several months, there had been no progress, so I visited my local Federal MP. The following month, I was assigned a personal case manager who reviewed my application and arranged appropriate assessments. The decision to deny my claim was overturned. I was awarded a retroactive payment to the application date.
After the third application, I lodged a complaint through my MP. This was handled by the Minister and I was invited to provide feedback to a senior manager at Centrelink. During this call, she identified several errors that had been made by Centrelink officers and immediately started the process to ensure they didn't make the same mistake again. She ended the call by apologising to me.
This information was fed back to the Minister, who wrote to my MP. The MP provided me with a copy of the Minister's letter. I'm hoping that my feedback has led to an improved experience for other DSP applicants.
Disability
After securing access to the Disability Support Pension, I started to accept the idea that I was disabled. I had gone from living a full life to significantly reduced functionality, and was mostly housebound. When I ventured out, I took steps to avoid another viral infection. I moved to Melbourne and lived by the bay.
As I came to terms with my disability, my small group of friends became smaller. Some had been openly dismissive and others formed opinions that I had given up and wasn't trying to get better. They had no concept of non-visible disability. While the situation was initially hurtful, I eventually accepted that I was better off without them in my life. I discovered an online support group, which helped me immensely.
Increasing pain led to a diagnosis of a problem with my central nervous system and with my back. I was able to take advantage of publicly funded hydrotherapy, which helped musculoskeletal pain, but not other forms of neuralgic pain that didn't respond to medication.
This had an impact on my mental health and my treating GP suggested that psychotherapy could help me cope with not just my disability, but the grief I was feeling about losing aspects of my life that were important to me, while in my mid thirties, particularly loss of income and career.
Back to Work
In 1999 I decided to try working again. I approached Centrelink with my plans and was referred to an employment service.
The employment service consultant focused more on my disability than career objectives and I found their suggestions unhelpful.
Undeterred, I registered with one of the large employment agencies and was invited to attend an interview and Excel spreadsheet software test. The following week I began a temporary assignment as a payroll analyst at the Australian offices of a large international corporation. I worked 2.5 days per week.
When I completed my assignment I took a break and was asked to return to project manage a system upgrade that needed to be up and running before the end of December 1999. I accepted the role, which I delivered on time. Into 2000 I was able to increase my hours to full-time and manage my health.
Remission
I left Australia in July 2000 and flew to London. Out of the blue I was approached by a recruitment agency with an opportunity with an oil company in The Netherlands. When my contract ended, I secured a permanent job with a chemicals company. The job started well. I could manage my health by resting during quiet times of the month. During busy times I concentrated on working long hours and resting. My manager recognised my efforts and offered me a role on a project to role out a new computer system across Europe.
Disabled Again
My new role involved a lot of travel in Europe and lead to a major decline in my health. I was eventually unable to work. The company's doctor refused to accept my medical history documents or diagnosis from my treating specialist. He told me to return to work. My employer accepted that I was sick and provided me with access to short term disability benefits through the company's insurance. When the insurance ran out I was forced to make a difficult decision. I had no income. was unable to speak the language fluently and did not qualify for government disability benefits. My only option was to leave the country I had chosen as my home and move to the UK.
No Safety Net
I spent several months resting and stabilising my symptoms before finding a short term temporary position with a city council. My assignment was cut short by my manager because I took too many (unpaid) sick days.
My next role as a health analyst with the NHS was more successful. After my assignment ended, I moved to rural area and secured a similar part-time position. As my experience increased, I reduced my days to three per week and was home based, with occasional visits to the office and GP practices.
I returned to Australia in 2008, along with my partner and two cats. The working situation I had enjoyed in England did not continue in Australia and my health began to deteriorate again.
I applied to go back on the Disability Support Pension. My claim was denied and I did not have the energy to go through the appeals process.
The pattern of working in contracts, with breaks to recover between them, continued for many years. Sometimes I shared information about my disability, and sometimes I kept quiet and suffered in silence. Through this effort my health stabilised and, for the most part, I achieved the best possible work/life balance. I continued to encounter managers who refused to accept my disability and others who were empathetic to my situation.
Career to Disability Support Pension 2.0
The COVID-19 pandemic arrived as I was working in a temporary position in the private sector. Lockdown provided the perfect working environment for me, where I was able to rest when needed and complete my work at the time of day that suited me.
After the assignment ended I found a position in NSW and relocated to a regional city. I was upfront about my requirement for adjustments, but the employer did not provide them and I was forced to resign. That was to be my final salaried employment position.
In 2023 I participated in the government funded Self Employment Assistance (SEA) program. I contracted COVID-19 during the first week of the program. Although my symptoms were fairly mild, I deteriorated rapidly when my immune system dysfunction was triggered by the virus.
Disability and Ageing
As I age, I'm affected by age-related ailments and it is sometime difficult to determine whether the impacts are related to my age or disability, or both. From a support standpoint, I am now too old to access the NDIS and any requirements for care and supports need to be managed through MyAgedCare. The application process is handed by Centrelink and involves a form to be completed by a doctor and an aged care assessment to determine the level of funding, if the application is successful.
What's Happening Now
The DSP provides a safety net, but is not the end of the story. Life goes on, and I continue to look at ways of working within my abilities. This is difficult, due to the nature of my dynamic disability. My energy fluctuates between being able to undertake minor tasks to not being able to do anything more than getting out of bed. Even sitting, partially reclined, at my computer isn't possible on my bad days.
I have a great team of specialists, who deliver services via Telehealth. My GP coordinates my general health requirements, including prescriptions, blood tests and referrals. I am able to walk, unaided, but carry a walking stick for occasions where I have to stand for extended periods.
My business services deliver solutions to employers to fulfil their obligations to support job applicants, new hires and employees, with disabilities. I also develop initiatives to provide services to Australians facing disadvantage. I work within my own capabilities to ensure I am able to deliver services as promised and avoid further deterioration of my health.
My life is quiet, with much of it spent at home. When possible, I do some light gardening and cooking. I developed in interest in designing and crocheting blankets. However, I have trouble following the patterns I have written and have difficulty using a crochet hook. I occasionally go on trips for business. These trips require a lot of planning and include rest and recovery from travel and attendance at events. I sometimes visit the coast with my partner and enjoy photographing the artwork on silos and water towers that we pass on the way.