Indie* has had cerebral palsy since birth, and it will be with her her whole life. She shouldn’t have to regularly prove that to Work and Income to receive support, she writes.
Recently, after receiving a call from Work and Income I’d waited two days for, I was left crying in my wheelchair, in a public space where I study.
I had no money, but was told they could not help me, and that I had to prove I had a doctor’s appointment to prove, once again, that I had a lifelong disability. Even though I provided this evidence only a year ago. I received no letter. Just an “expired” note on my online portal, with no explanation, and no warning that this was about to happen.
Mistakes can happen. But when a mistake affects someone to the point that they’re unable to buy food, pay their rent or travel, it becomes very hard to bear. This was also a mistake that made me feel like I wasn’t trusted. I trust the medical professionals who have made it very clear that my disability is permanent. However, the permanency of a lifelong disability has not translated into lifelong support. To be so bluntly told by Work and Income that their mistake was my problem to fix gave me serious concerns about the attitudes of public servants towards people with disabilities and health conditions.
I have cerebral palsy, a physical disability that was caused by a brain haemorrhage and hydrocephalus. I had two brain surgeries before I was even six months old. I use a wheelchair some of the time, mainly because of the pain. I am a student and also work in education.
Only now, at 23 years old, have I discovered that there’s a minute possibility that a medical error could have contributed to my disability. If this were the case, I would be eligible for support through Accident Compensation Corporation (ACC). This would mean I wouldn’t need to prove my lifelong birth injury every two years (or less, as the case has been for me). Should our eligibility rules for ACC really be designed in this way, leaving people with different levels of assistance depending on whether they can prove an error decades ago?
People who experience injury and are covered by ACC can get access to private specialists, and therefore shorter wait times when accessing healthcare. A person who experiences disability not as a result of an injury is likely to wait a longer period to access support through a public health system.
Last year I finished a dissertation on how the End of Life Choice Act can impact people with disabilities. I realised that the cost of disability to individuals, whānau and communities is far greater than just the cost of treatment and care. Disabled people are scrutinised for factors that they cannot control. Disabled people are then paying for this with money, their health, their relationships, and in many cases, their self-worth.
Another thing that has been clear to me in both my own life and in the research I have done is that disabled people, especially those who have been disabled from birth, are being excluded from conversations that directly affect us. Proposed changes to ACC to cover birth injuries do not include people in my situation who have a birth injury – which concerns me because of what it is implying about the worthiness of disabled lives in Aotearoa.
The ACC Amendment Bill currently in progress is a significant step towards providing support to individuals who have been affected by birth injuries. While the focus is on injuries sustained by parents during childbirth, it is still pertinent that babies who experience injuries through birth, such as through the use of forceps, receive adequate support. Whether you receive support through ACC or the public health system, everyone should be entitled to treatment that is sufficient, suitable, and doesn’t require constant administration.
The government has announced a new Ministry for Disabled People, which is meant to improve the participation of disabled people in policy-making. But for that to happen effectively, we need to listen to the experiences of disabled people, and acknowledge that these experiences are valuable, important and worthy of support.
The question is: where to from here? It is clear to me that we need ACC, and we need it to operate in a way that supports people who require financial assistance. But we still need to do better.
We need a system where no person’s disability makes them less worthy than another disabled person. A system that acknowledges lifelong disability, and doesn’t demean individuals through asking for proof of such a lifelong injury every two years, sometimes less. A system that doesn’t leave people who rely on it in tears, in their workplace, in public. A system that includes disabled people fully in the development of policy.
Equitable support for people with disabilities is vital, and something that Aotearoa is capable of achieving. Validating disability that has been caused by injury or accident, as well as other non-injury causes, will result in fairer outcomes for those who need healthcare and welfare services. All disabled people are valuable people. Government support ought to be dignifying, and committed to working towards a fairer and more just society.
* Not her real name