Hi. I’m disabled. I have a rare genetic disorder which results in degenerating muscle function. I have some chronic pain due to strain on the muscles, and I use a wheelchair heavily (but not exclusively) to avoid injuring myself in falls because I am too weak to stand safely. This has affected my life in ever increasing ways since I was 13, both physically (these days I can’t do anything like lift weights at the gym, or stack firewood, or even pick up a fork I dropped on the floor), and socially (with teasing and bullying at school and lately with mobility restrictions). But just like anyone else I love my friends and family, I do my best to love and support my partner, and I spend the weekend hoping the bloody rain will clear off so I can fire up the barbie just like anyone else down a quiet NZ cul-de-sac. I was in a wheelchair and everything was okay. Until recently I had a successful career as a software engineer in the fin-tech sector in NZ. Until recently, I also owned a home.
Then my partner became chronically ill with an acquired autoimmune condition. She could not get any support because I was expected to support her, both in personal maintenance and grooming and financially. The former was demonstrably impossible, the suggestion itself laughable, and not a little frustrating because I was having difficulty getting the support I needed. The latter was no longer tenable, due to the high cost of property coupled with the elevated living costs of two disabled people. I had to give up my PhD studies and we lost our house. We then had to move into a series of temporary and unsafe housing arrangements. While in one of these, I had an accident due to the property being unsafe and effectively put my career on hold. By this stage we were homeless, living in a garage apartment with family. It was incredibly unsafe, flooded regularly, and I could barely even walk to the toilet. I could not even get my wheelchair in the house. I injured myself by falling on the stairs and on the slick floors almost every 3–4 days. The moist, unsanitary conditions made my partner’s illness worse and worse by the day. When I asked for help to find housing, I got none. Not even insufficient help such as being put on an unfortunately long waiting list or being offered accommodation that was difficult if safe or even any accommodation at all. We got no help at all. We were turned away.
This led to a long and unsavoury battle of attrition for help with various organisations who had no inter-operation protocols and tended to lump responsibility for any aid with the other organisations. We had to cast our net very wide, and while most people were sympathetic they were either not able to help directly or were quite often not well informed about where and how we could get help. But there were some that actively prevented us getting help, usually by re-framing the disabilities we have as somehow not real or my fault. I get very tired of being treated like I made this happen, or like I allowed it to happen, or like I’m a malingerer, or like a hypochondriac. Some even committed gross and knowledgeable violations of my rights as a patient and my legal privacy. Sometimes I was told to get a new case manager, but I was actively refused even this basic right. Sure there’s always going to be some people that are unhelpful or difficult in any organisation, but organisations are responsible for their people and people are the interface to organisations and these organisations were actively avoiding their responsibility to help. And we found we could not even pursue our complaints: when we approached the Health and Disabilities Commission, Privacy Commission, or similar places with a goal to get some kind of restorative justice I was either referred back to the organisation at fault’s complaints process or told to lawyer up. The first suggestion wasn’t a solution since the complaints process was the problem in the first place, and the second was bone-headed given that I could not afford my accommodation.
Now I want to be very clear about this: none of my life choices precipitated my condition. There’s not a family history of this disease, so my parent’s life choices are not a causal factor either. My partner didn’t choose to get sick. We didn’t choose to take the only available housing despite its lack of safety. We didn’t choose to have to live apart for a year. The one thing that was a choice was to retain what little solvency remained to us and for this we were punished; we were actively penalised for being fiscally responsible.
Why am I framing my disability in a narrative of “consequences of choice”? Because with the “Right to Die” referendum, this government has managed to do more to allow the chronically disabled to die with dignity than to live with dignity.
I personally support the right to a dignified death, but I don’t feel that I have the ability to have a dignified life. Can I have both, or am I just being entitled? Are disabled people not enough of a voting bloc? Are we not loud enough? Not critical enough? Does thinking about disabled people upset people because we’re reminders of biological frailty? Are we just not attractive enough for the cover of slickly produced glossy political flyers? Do I have to send ministers pictures of people with disabilities daily? Put them up in parliament? Because it seems like I need to keep reminding people we exist at all, let alone need help.
Both as part of my local government’s development and recovery planning and in the run up to this year’s election, my partner and I attended various events both outside of and across the political spectrum focussed on populations that are at risk of hardship, and the disabled population was conspicuous by its absence. When the speakers and MCs would list all the populations that we need to help, “disabled people” were not there under any name. The very few times a benefit or aid for the disabled was mentioned it was only as a secondary effect of helping a completely different group, a statement like “it helps the disabled too, I suppose” guiltily dangling off the end of the presentation like we’re an embarrassment. The recent Health and Disability System Review delivered by this government was described by CCS (the largest disability advocacy group in NZ) as “at odds with years of consultation with disabled people and whānau”. Which is telling because even with more than 9 million dollars spent they didn’t reach out to the disabled community, literally the least they could have done.
It’s not that I haven’t been asking for help, I’ve been asking for help. I’m always told to not be afraid to ask for help, and I’m really not afraid or too proud to ask for help. But when that help is a job, or a safe, usable home, or enough money to live on, I’m shut out in the cold. Or worse still, I have people dictate what help they think I actually need. The recent Disability Employment Action Plan touted mentorship and training. I don’t need that. I don’t need leadership encouragement. I don’t need coaching, I need a fair chance at a job. I was in mentorship roles. I’m disabled, not incompetent. And this is ignoring the fact that people that would immediately benefit from mentorship and training would only end up in my position after the mentoring and training finished. I need employers to stop seeing me as an operational risk before they see me as a capital talent resource. I need them to feel like adding a disabled bathroom (or floor modifications for the blind etc) is a good thing rather than an onerous cost. I need basic logistical support. I need to know that my access and ability to travel is secured. I need to be able to get to my job’s physical location because despite what people think face-to-face is still a primary method of conducting work and business. I need to have enough care support that I’m not exhausting myself daily on simple tasks that are difficult and dangerous for me. I need to be able to buy a suitable vehicle, be able to park it, and I need to make sure that I can use it long-term. Cycle lanes and removing parking in business districts actively impede my ability to travel in their current implementation because they are almost always planned and deployed without consulting the disabled, and when I raise this issue in conversation people assume I hate cyclists and am opposed to any form of car-free policy. Public transport is difficult and unprepared for my requirements, and often has only partial disability support across the transport network. Electric vehicles are the future, there’s no doubt about that, but I can’t afford to get a petrol vehicle with expensive modifications and repeat that process in 10 years; the current provisions only allow one modified vehicle to be funded over the course of my life (and even then it’s a grant application program that amounts to a lottery for people), and there’s no plans to support the transition to EVs for disabled people even if the technology existed.
Thankfully I’m not homeless any more but I am really lucky, and it was only a quirk of fate that I gained a home. It wasn’t the Invisible Hand of The Market or Government Assistance, it was just blind luck. Even so I’m not sure if I can retain this home. And so I wonder if that’s what New Zealand is to me, a place where it’s just dumb luck that some people even have a home. Other wheelchair users I know are in protracted emergency housing, and this has even resulted in the deaths of some. People are actually dying in motels without care support or even bathrooms they can use, and policy makers are still collectively tutting and saying “something must be done” and doing fuck all while it gets worse for people day by day. It’s actually so bad that CCS found NZ could be in breach of Article 19 of the Universal Declaration of Human Rights. As hard as my chronic pain is and as difficult and limiting as my mobility problems can be, they’re nothing compared to how exhausting and dehumanising just being left to dangle is.
I’m sick of being told to ask for help, only to ask and get none. I’m sick of engaging in the policy process to change things and be conspicuously omitted when I’m right there in front of people. I’m sick of people thinking that all the problems surrounding the multi-dimensional difficulties have already been solved in NZ so we don’t need to think about them. I’m sick of being de-prioritised, and even more sick of being rebuffed when I ask why other groups are given preference: I know there are many populations and communities that need help but I want to be included in the help. I’m sick of any policy that acts in favour of the disabled only doing so incidentally because it’s a no-brainer that acts in someone else’s advantage first, and I’m sick of the enactors of the policy acting like they deserve my praise and a big shiny medal for helping the disabled in the increasingly rare cases where disability issues take precedence. I’m sick of policy makers merely acknowledging the problem and acting like they’ve done a great job. I’m sick of pointing out where policies remove the agency and ability of disabled people to have quality of life, and sick of people dismissing my points like I’m opposed to the goals of the policies and not the difficulties they raise. I’m sick of having to sit up and beg for basic rights to be protected and getting the scraps off the table like some kind of trickle-down effect. Most of the policies that help the disabled affect large cross sections of vulnerable populations and changing the priorities wouldn’t alter the good the policy does.
I’m tired of having to say this over and over and all the while hearing about “raising awareness”. I’m tired of my life and my identity being by necessity defined by relentless self advocating, because I’m so much more than that and I have stuff I’d like to do.
I’m fucking livid and if you aren’t too then what the hell is wrong with you.