Permanent Residency - Health Waiver

I'd like to remain anonymous - I don't want my condition  to define who I am to people I work with or know in passing. I find when I tell people they change how they interact with me, and it takes a long time to shift their perception of what I can and can't do and who I am - they pity me, but they also subconsciously put a limit on my abilities and what I can achieve. 

In terms of getting my permanent residence (PR) visa, there are a few points I'd make. Firstly, and less substantively, the effort involved in gathering all of the necessary information and documents needed to prove that you should receive a waiver is substantial. I had to spend hours gathering documents and other evidence to support my application, which went way beyond what was required for the core application. Some of this documentation had to be paid for e.g. letters from my specialist, I was able to afford this but it was an extra financial burden we had to bear. I also felt that I needed to engage lawyers to support me through this process, and I'd say that this was absolutely vital to the successful outcome of my application - there were approaches they took to arguing for the waiver that wouldn't have occurred to me, and I'm sure they were crucial in securing the outcome. I want to say that I'm incredibly grateful for all the work the lawyers did, but it was obviously a very costly exercise, and not everyone will have the resources to be able to pay for this.

This process was also incredibly invasive, for me, my immediate family and my broader family (in particular my parents and parents-in-law). I was forced to ask my wider family for very intimate financial information, and then supply that information to the government. In the case of my parents this was particularly galling as they are not Australian - why should they, as foreign nationals, have to inform the Australian government of their intentions with respect to passing on their wealth.

I was also forced to reveal information about my condition and likely prognosis to a much wider group of colleagues than I would otherwise have chosen to do, and this did (for a while) result in casual discrimination. In many cases this discrimination was completely unintentional, and came from a place of concern about me, for example people rescheduling meetings from the end of the day as they thought I would be tired and unable to fully participate. While I appreciate the thought it's actually damaging to my professional standing, and could easily lead to being passed over for promotion, not being given a big project or team to run etc, as people feel I can't cope because of my medical condition. For people with disabilities to be treated as true equals, they need to make the decisions over what they can/can't do in all aspects of their lives, and until perceptions are changed to enable this there's always going to be an issue with discrimination.

Finally, the very fact that my family and I had to go through this process was in many ways quite demeaning. It placed a lot of stress on my family - I didn't appreciate quite how much until my PR was granted, and the weight was lifted from all of us. For example, while the application was being processed (and for a while afterwards, until I got the records updated), I was stopped at the border every time I left or re-entered the country. I understand the border officers were doing their job, and it was always possible to explain the situation, have them check my underlying 457 and bridging visas and then re-admit me, but this was an incredibly stressful experience - perhaps one time I wouldn't be allowed back in, because someone makes a mistake?

More generally, the heart of the process is proving to the government that you're worth more to the country than the cost of your treatment. So you're reduced to coming up with lots of different arguments for why your contribution to society is worth more than whatever this number is. How can I possibly quantify how much being able to live and work close to my husband's family is worth? Or the fact that we get involved in community organisations?

More generally why should my condition, which attacked me at random, through no fault of my own, mean that I have to go through this? I understand that my treatment is costly, and that Australia can't afford to have an open doors policy that allows anyone from anywhere to move here. But I've already proved that I have a credible, tangible reason for wanting to live here (in my case, my relationship with my husband and our daughter) that qualified me for PR in the first place, and it was difficult to come to terms with the idea that this wasn't enough, that because of my disability I had to do more than others to be allowed the right to stay indefinitely.

I'm planning to apply for citizenship this year, when I become eligible, and I love Australia and my life here - we recently bought a house, our daughter has started school, and we'd like her to grow up here. I do understand why the government has the current rules in place, and that there are fiscal implications for allowing people with expensive treatments to live here and potentially be a net drain (financially) on the country. But at the same time, it's rather incongruous that such a friendly, welcoming society, where everyone is your mate and helps out from day one, takes this approach to deciding who is worth accepting into their society and who isn't. It feels like there must be another way that's less demeaning and invasive to balance these two competing goals.