Nothing about us without us
Our three sons were born ‘normal’. But what is normal …. being born without a disability? But were they? Sam was born a month premature barely breathing, Rory developed cancer aged 6 and Colt had breath holding spells which caused him to stop breathing and pass out for what felt like the longest time. I guess what I mean by ‘normal’ is that in their younger years there were few challenges beyond the norm, to us living our lives the way we wanted. Disability, and a place in the disabled community, became real for us when Rory was diagnosed with brain cancer in 2009. All of a sudden Rory, and our family, were faced with significant challenges to living our lives the way we wanted. These challenges have increased as Rory has grown and faced cancer a second time. We have had to research, learn, fight and secure supports for Rory to ensure he has quality of life. Rory did not survive only to be compartmentalised and live a life filled with empty space devoid of purpose. Fortunately there are support systems in place in Aotearoa, if you can find and negotiate them. Unfortunately the systems are fragmented, complex and under-resourced. For those with disabilities and their families it is a continuous struggle. Securing and managing supports consumes a lot of time and energy and you cannot take your eye off the ball, even for a second. The full participation of disabled people as an integral part of our community is a separate sizeable issue.
Thankfully in October 2021 the government announced transformative changes for disabled people. These include;
- Establishment of a Ministry for Disabled People
- Implementing the Enabling Good Lives approach to Disability Support Services on a national scale
- Introduction of The Accessibility for New Zealanders Bill – new stand-alone legislation that will make Aotearoa more accessible.
- Establishment of a new Accessibility Governance Board
The Enabling Good Lives approach has been running as a pilot in Christchurch and Waikato for a number of years. A group of passionate people in Taranaki have formed a Steering Group to work with organisations to determine how EGL will be rolled out in our region. They will help determine what will work for disabled children and adults and their families. How can we have greater choice and control over our lives and make more use of natural and universally available supports? Sean, Rory and I are keen to contribute to EGL Taranaki and attended two workshops this week. It was heart breaking and inspirational. A quote by one of the participants continues to resonate with me “nothing about us without us”. This is at the heart of what EGL Taranaki hopes to achieve.
The shock news of the week for us was that ACC have reversed their decision and decided to accept our treatment injury claim for extensive calcification of Rory’s brain and cerebellum as a result of high dose radiotherapy, causing severe cerebellar ataxia. ACC have still not been able to secure an opinion from a Paediatric Radiation Oncologist on Rory’s case. We were scheduled for a hearing next week. We are uncertain what this means but we consider the first step to be a full assessment of Rory’s condition to determine his needs. There is a Neuro rehab therapist in Auckland who specialises in patients with Ataxia. We hope she will be able to do the assessment.
Rory’s new Support Carer Deanne started this week. Their first day together went well and they attended a meeting at the Junction in New Plymouth to induct Rory as a volunteer. Unfortunately Rory has had to cease volunteering at the Alzheimers Taranaki day programme as it wasn’t working out. We have purchased an Oximeter to measure the level of oxygen in Rory’s blood if/when he catches Covid so we can more accurately determine if he needs to be hospitalised.
We were very proud to see Colt walk out of the house on Wednesday to begin his first day as an Intermediate (Year 7) at IPS.