Cost-effective tech

I’m pretty slack. I’ve let the people with more-or-less perfect hearing talk ALL DAY about suitable accommodations for the profoundly deaf and what’s most cost-effective. Which is probably as it should be, since all of them know far more than people who are actually hard of hearing.

If on the off-chance anyone DOESN’T know what technology for long-distance oral communication is like (I don’t know, apparently this is something everyone learns in kindergarten maybe?) and wants to hear from someone who’s actually looked up alternate ways of talking to people that don’t involve normal conversation through a phone, you’re in luck! Because I (*drumroll*) have DONE THAT.

Now, obviously there is your standard written communication – the fastest being email. This is what I prefer, personally, but clearly it wouldn’t be appropriate for doing a radio interview. You need to be able to actually hear that. However, in theory the host could write a list of questions and email them to Mojo, record himself asking them, and get her to record her answers and send them. Then the radio station would have to carefully stitch all the audio files together and adjust the background noise and volumes and things like that so it sounded like Dr Frankenstein wasn’t responsible for its creation. The downside of this is that most hour long radio interviews aren’t just questions and answers. They’re conversations. Which means they have to be able to respond to each other. I guess they could do one bit at a time, but you’d have the same costs for editing it properly and it would take FOREVER.

Some people do radio interviews over the phone, and while that doesn’t really work for someone who’s profoundly deaf, it’s true that there are systems for deaf people to use phones. Specifically, a relay service with a translator in the middle who generally types (I believe – I have never actually used this service, only looked into what was available, and didn’t think it would be suitable for me) the responses to the deaf caller and reads their answer back to the hearing caller. This also takes longer than standard conversation, plus it wouldn’t be Mojo’s voice, unless I guess they had the translator only translate one way. However the radio station would still have to edit out the pauses between questions and their responses, which again, costs money, plus the translator needs to get paid for the over an hour that they’re sitting their transcribing everything the radio host says. I have no idea what the operating costs of this service are, but I imagine they’re paying people a decent wage because they have to be extremely reliable and extremely honest, and quite possibly adept at understanding all sorts of accents (including English spoken by someone who’s never actually heard it spoken before), plus of course they need to maintain the technological set up required.

Then there’s everyone’s favourite means of catching up with their family on the other side of the world, Skype. This can be ruled out straight away. It’s just not high quality enough to be able to lipread the person on the other end. The only way it would be feasible would be ridiculous workarounds like having the host write everything he says down on a huge pad of paper and hold it up to the camera for her to read.

There’s also automatic transcription software, which some people with perfectly fine hearing might have used before themselves – I believe Google has it as an option if you use their phone services and get voicemail. However at this stage most software is either affordable and REALLY REALLY BAD, or really expensive and only really bad. To be at all accurate you most likely need to attune it so that it recognises the individual way you speak and how you pronounce words, which is useful if you’re only using it to transcribe what you’re saying (ie, having the software take dictation instead of hiring a secretary to do it), not so much for figuring out what the radio host from a community radio station is saying. In addition to the costs of the software, either they have to air it live and prepare for on air confusion, or again, edit it.

Finally, there’s good old fashioned face to face conversation. This is easy to air live, no need to edit out long pauses or equalise audio quality. There’s no problems with video quality being high enough to lipread. If there’s any confusion it’s much faster to clear up because you can rely on facial expressions and body language as well as quick response time. Because we’re much more used to it, it also produces a much more natural sounding conversation that isn’t stilted and awkward. Yes, it does involve transport costs, but there are no other hidden costs and it gives the best quality product as well as being easier for the people involved.

See, communicating using all those other workarounds is actually pretty damn stressful. I mean, I’m speaking for myself here obviously. I’m not Mojo, I don’t know if it’s stressful for her. I wouldn’t be surprised if it was, but I wouldn’t be that surprised if it wasn’t either because my issues with audio also come with mental health problems and are related to processing, not receiving the sound in the first place. (It’s just like a hundred times harder when it involves speakers. I don’t know why, but when I’m buying multi trip train tickets at the Wellington stations my brain can’t even connect the sound coming out of the speakers to the person standing in front of me. All I get is *background noise* and *silent person moving their lips*. It’s easier over the phone, but I’ve built up such an aversion that I’ll do pretty much anything to avoid doing it anyway.) And when it comes to the radio host, it’s most likely something he’s never done before at all. Having to communicate in a brand new way, knowing that people are listening to you do it and judging your performance, is kind of off-putting and it’s just a lot easier to avoid that if at all possible. And let’s be real here. It’s not like she was flying to inner Mongolia or something. Flights to Masterton and back are not that expensive – someone calculated it as 0.73 seconds of welfare expenditure, let alone other costs. Considering she was speaking on disability issues, something that she’s uniquely placed for, and a sector that gets shut out of politics on a major level, this is really not an unreasonable cost we’re talking about. I’m not even going to compare it to other things that taxpayer money has covered – other people have done quite a bit of that, and while they’re incredibly illuminating, I don’t think they’re even necessary. This is just plain not that big a deal.

A practical view of the welfare system

So yesterday the Herald printed a piece written by Damien Grant, a libertarian liquidator who once served jail time for fraud. (I don’t think jail time in and of itself is relevant – the fact that it was for fraud is.) Apparently he used to be a fiscal conservative but changed his mind sometime over the last three years so there are inconsistencies in his views over time. But regardless, the piece he had published yesterday is basically an argument that we should go soft on tax fraud because they contribute to the economy, while beneficiary fraud should be punished with jail time. For fun, he’s also written about conditions in jail and how much it sucks, but apparently it doesn’t suck so much that people trying to survive shouldn’t be put there.

Aside from the bizarre counterintuitiveness of his argument – yes, high income people pay more income tax, because they get most of the income – however, if they’re tax frauds then by the very definition of the term they’re not contributing – it made me think about the money we spend on social safety nets and how to get the best return on it.

In my opinion, there are two options that don’t involve wasting money on “ambulance at the bottom of the cliff” stuff like emergency healthcare, court time, prison sentences, addiction services, lost productivity or theft from workplaces, etc. (Yes, shock! Some beneficiaries work.)

The first option, which I obviously prefer, is a comprehensive welfare system that allows people to live at least at a basic but affordable level. None of this calculating the minimum you need to live on and cut that by ten percent and every so often increase for inflation, which is allegedly how they do it, but an actual look at what the bare minimum you need to live on, and then maybe increase it by ten percent, so people can slowly save money in case of emergencies like cars breaking down or sickness or repairing an appliance. And combine that with more of a discount with the community services card on essentials like health care, and dental care, etc. And build the state housing system back up again so people don’t have to live in slums. Basically, all the preventative stuff that allows people to contribute to society with a minimum of downtime or slowly wasting away or constant stress that makes them sick.

The second option is low or no welfare. However, for this to actually save money, you have to follow through. You can’t combine it with public healthcare that treats the inevitable illnesses and health problems at low or no cost, otherwise the meagre amounts you save on individual welfare are going to be lost when the healthcare budget balloons. You’ll also need more money for the justice system and the education system to deal with the dysfunctional, desperate people the system produces. If you want to reduce welfare below livable lessons, the only logical step is to reduce everything else as well and let people die in the street. There’ll still be a cost to the justice system, and you’ll probably need to fund corpse collectors and pauper’s funerals/graves. You’ll also probably end up with a lot of communicable diseases which won’t always confine themselves to the poorest of the poor, particularly since some will inevitably get jobs and go to work outside their neighbourhoods. I’m not sure exactly how much you’d have to cut to bring the combination of whatever welfare you do keep and the clean up costs to the lowest level, but I’m sure a good economist could figure it out.

Ki ōku whakaaro though, anything between those two systems is a waste of money based purely on ideology. I mean, those two options are still based on ideology too, because you have to decide whether a society in which as many people as possible are in a position to contribute is more or less important to you than a society in which the government spends as little as possible on social services. But it’s a pretty basic fact that money spent on prevention of social problems caused by poverty is going to save you the increased amount of money you’d have to spend cleaning up social problems caused by poverty, and the only way to get around that is to dump the emergency stop gap measures that cost so much money.

Waitangi Day and Te Wai Pounamu

On six separate days through May and June 1840 Treaty signings were held in the South Island, largely down the east coast. However, Hobson had already declared British sovereignty over Te Wai Pounamu on May 21 on the basis that it was terra nullius, the same justification for the annexing of Australia. Apparently it wasn’t logically inconsistent to claim that and also to seek a Treaty with the inhabitants, or at least, everyone was willing to pretend it wasn’t. (It was much easier to pretend in the south – the land wasn’t as good, which meant a lower population and more movement around territories that the Crown could later claim were wastelands as they didn’t have a permanent settlement.)

Land sales in the south occurred between 1844 and 1860 (except Stewart Island, which was bought in 1863) with the Crown buying up huge tracts of land at once. The Canterbury block, for example, was eight million hectares for which they paid just two thousand pounds – one third the cost of Stewart Island. Rather than negotiating fairly, agents such as Commissioner Kemp used threats to buy the land from rivals or to use force while promising that one tenth of the land purchased would be set aside as native reserves. This “one-tenth” was reduced to four hectares for each person, generally of poor quality land. When it came to buying Banks Peninsula, the local chiefs refused to sign. The reserves would not be enough even for subsistence. So instead, the Crown simply passed the Canterbury Settlement Act which basically went “Yeah, all this? That’s ours now.” (Again, they still tried to get Kai Tahu to agree to the annexation for another seven years.) Hamilton was the only agent to really express any hesitation over what they were doing, on the basis that two years ago a 12,000ha piece of land in the area had been sold for fifteen thousand pounds, which he was being instructed to pay just two hundred pounds for. Eventually he sold himself the justification that the rest of the land was valueless to Māori, whereas Pākehā settlement would bring benefits of civilisation and trade.

Not that the Māori could do much trade. Kai Tahu and the other Te Wai Pounamu iwi were left basically landless in an area where the big money was in sheep farming, something that doesn’t need as good pasture as the cropping and dairy farming in the north but which needs a lot of it. What reserve lands they did have left were controlled by the land commissioners, who could lease it out for dick all or sell it off at their discretion.

Ultimately the Crown paid just under fifteen thousand pounds for the entirety of the South and Stewart Islands through the use of threats, bullying and outright theft, leaving Māori dispossessed and impoverished while Pākehā settlers got rich on the proceeds of what Mantell had called “an uselessly extensive domain”. European cognitive dissonance had won the day.

The long road to success

Something happened yesterday that shifted my world just a couple of degrees off-centre. I was coming home from the doctor, cleared the mailbox and walked up the steps to the door, digging my keys out. There was a parcel on the doorstep – course materials, for 279.301. Third year social policy. Government Policy, Planning & Administration.

It’s pretty common knowledge that this isn’t my first go at higher education. In fact it’s my third – the two previous attempts I didn’t even last a year. Picking up the course materials for a third year paper on policy process – not Classical Studies or English, but policy – was this moment of utter surrealness that basically just slammed into me. Unwrapping it and starting to look through the administration guide did not lessen the feeling. A while ago, my progress was classed as “ugh, not graduating until 2015.” Then it became “nearly two whole years left!” Now it’s “just over a year to go.” And there are a million posts out there about imposter syndrome, but the weird thing is that along with that, and at the same time as that, I’m also doing shit like looking at this three page list of relevant journal articles and books and going, “Ooh, that sounds interesting!” Part of me wonders what the hell I’m doing with this stuff and an entirely different part feels… sort of competent.

In completely different events from yesterday, of course, was the discussion about Anne Tolley’s criticisms of Metiria Turei['s clothes], which is only relevant because I was talking about it with Metiria. It occurred to me that this phenomenon, where New Zealand is small enough and laid back enough that we can have casual chats on Twitter with some pretty notable MPs (and political commentators, and current affairs show hosts, etc) makes politics here pretty different from physically bigger countries like USA, Canada, Australia, or more populated countries like the UK. Not for everyone, of course, but then you combine that with the relatively high number of MPs who come from pretty modest backgrounds in comparison to the US or UK and suddenly a lot of things start seeming a lot more plausible. I think Twitter has actually been quietly instrumental in being able to get this far through a degree, in switching social policy from my minor to my major, as well as in taking what I’m learning in policy and Māori studies and anthropology and history and being able to apply it in real life – and in taking real life and applying it to my school work. The conversations I have, and who I have them with, make all the theoretical stuff we cover in class practical and relevant. I don’t know that I’d get that anywhere else – maybe for anthropological and indigenous-focused papers, because damn I learn a lot about racial issues and colonialism on Twitter from both local and international people, but not for policy.

(And of course, if I’m really lucky, I’ll be able to make contacts on Twitter that will be useful when I have to actually (gerk) find a job.)

About WINZ Payment cards

Ever wondered how WINZ gives people emergency money for food, etc? Quite possibly not. For a while I just assumed they transferred it into your bank account – the problem with that being that it probably won’t go through until the next day, and the other problem being that in our system of no trust for beneficiaries, how could the government know you were spending it “right”?

I had a meeting with a lady called Bonnie today to clarify some things about my medical appeal, starting with the fact that it was a medical appeal rather than a standard appeal. Bonnie was actually very nice and helpful, far better than some other people I’ve dealt with, so if anyone else is in the Porirua WINZ area, props to Bonnie. Anyway, while we were talking she asked me some questions to get an idea of my circumstances and what was going on with my application for the disability allowance. I told her I’d been waiting until I had enough money to go to the doctor to fill out the medical certificate. To be honest, I could probably have afforded it this week because I got a heap of groceries last week due to the amazing generosity of a friend. But instead she checked with the clinic how much it would cost me and authorised a payment for WINZ to cover it, since that’s literally the only reason I need to see a doctor in the next just-over-two-months. While she was doing that she also authorised a payment for me to get some more groceries.

WINZ payment cardSo, this is a payment card. It works just like an EFTPOS card. Underneath that black bit is an 8 digit number, as opposed to the 16 digits on a credit card. The last four digits are the PIN, and yes, this is incredibly insecure, and it’s been in the news before, and it’s still how they do it. (Please don’t use this information to steal someone’s payment card, for the love of everything good and true.) While it doesn’t have a WINZ logo or label or anything, it’s still pretty distinctive. It doesn’t look like any of the bank cards that are common and it only has 8 numbers. If you’d seen one before, you’d definitely recognise it very easily. It also flashes up on the EFTPOS screen saying “WINZ Payment”.

While they had money for both the doctor and the groceries on the card, they have a way of programming it so that each portion of money can only be spent in certain places. The money for my doctor appointment (which she was pretty shocked by – she kept going “That’s so much!”) can only be spent at my doctor. The money for my groceries can be spent at any supermarket, but nowhere else. Further, the money is only good for three days. The day you get it and the two following. My doctor’s appointment is tomorrow so I didn’t need to worry about paying for it in advance, and after WINZ I went to the Warewhare to get a couple of badly-needed clothing items, Reduced to Clear to see if they had anything I needed (got some cheap cheese, considered and then dismissed some frozen capsicum or strawberries), and then straight to the supermarket.

((ETA: Apparently the card isn’t actually accepted at all supermarkets either. The Tawa New World doesn’t take them, so I’d have had to go right up to Porirua to use it anyway. Luckily I’d done the bulk of my shopping yesterday, and this was just a quick “NW has cheap watermelon and also that Popsicle slushie that I like” and I could put it on my debit card.))

It is a real experience being in a supermarket when you’ve spent months carefully budgeting your food, suddenly having a lot more money than you’re used to spending. And, of course, I do have more food at home than would usually send me to the shops. But normally my food budget is $30 a week, and while I’m getting used to that and pretty good at sticking to it, it does leave me a bit low on some nutritional areas, especially in the fresh produce section. I am not particularly upset at getting more money, you know? I also have a couple of gaps that have appeared in the last week, so I filled those in, got some stuff that isn’t hugely perishable, a couple of first aid kit things like band aids, and yeah, quite a few indulgences. Seriously guys, if you see someone with a payment card and you think some of their purchases are questionable, it’s because they haven’t been able to buy those things in a really long time. I never shop without carefully assessing each item and keeping a running tally in my head. And to be honest, I was still carefully assessing each item. It’s a hard habit to break. I knew there was no chance I’d hit the limit though, and indeed there is quite a bit left on there still. I might pick up a snack tomorrow after the doctor, I might not, but a decent chunk will go back to WINZ when the three days are up.

Sadly some of the restrictions on the card such as only spending grocery money in supermarkets have negative affects aside from just reflecting the government attitude towards the poor. One of the biggest is that if anyone has an arrangement for getting food from other sources, like community schemes where you put in money and get a box of vegetables, or shopping at a good cheap farmer’s market, or farm gate sales, you can’t use a payment card there. I also can’t use it at Reduced to Clear (actually I’m only about 95% sure of that, I forgot to ask but since it’s not a supermarket and she was listing Countdown, Woolworths, etc I suspect it’s not on the list), and not at the Warewhare either. Normally the Whare’s pretty expensive for food, but the stacks of things near the checkouts often have fantastic deals. Today I spotted boxes of those long tubes of coloured liquid that you freeze for cheap ice blocks. I would have been tempted if I could have spent the card there and if I could have easily gotten a box of 90 ice pops home. Instead I got a box of Frujus on special. (They were 5.99 from memory if you like Frujus. Countdown. Should be good until Sunday.)

That’s pretty much it, anyway. A very recognisable faux-EFTPOS card that can only be spent at certain stores that only lasts for three days. It was sort of interesting to find out about and I’m hugely grateful to Bonnie for getting me one. I’d just spent about ten minutes answering questions with answers that ended with “…but I can’t afford it” and teared up a couple of times when she was asking about family support and things. She asked once if I was “still” going to counselling and I sort of laughed and told her I couldn’t even start yet and even with the disability allowance I’d be down $9 a fortnight, plus transport. I also gave her the name of my GP in Christchurch who knows more of my background and can hopefully give some more comprehensive information for my claim.

The modus operandi of WINZ (TW)

When I moved to Wellington seven months ago I felt pretty hopeful.

I haven’t worked for much of the last ten years. For most of it, I’ve been on the sickness benefit, going back to my doctor every three months for another certificate saying I was still ill. I hated that benefit. It gave me a couple hundred dollars a week, which was okay because for the last nine of those ten years I was living with family with a reduced board and food in the cupboards, but I wasn’t able to save much and in the back of my mind I knew that moving out would be… problematic, to say the least. But being on a benefit, particularly a sickness benefit when you have an invisible, mental, disability, is soul-destroying. You don’t notice how much ableism is in the media until you look at it from that position in life. I wanted badly to be doing something useful. In school I’d wanted to be a teacher, most likely a high school humanities teacher, and when I was in seventh form I became a peer leader for incoming third formers who only encouraged that desire. “You’d be an awesome teacher,” one of them told me. (This may or may not have been linked to the rain day when I taught them to play poker with plastic counters.) Others confided in me about their problems or asked me for help with homework. Most peer leaders started dropping out after the compulsory program at the start of the year finished; I kept up the relationship that whole year. When the 2002 students strikes hit I ended up teaching a third form Spanish class so the actual teacher could help other staff round up stray kids. The year before when NCEA was introduced, I helped teachers mark unfamiliar papers during free periods or lunch hours. Helping kids grow into knowledgeble, competent adults was a dream.

I don’t remember exactly when I realised it was a dream I’d never manage. I think it might have been the time I attempted to get back into work, attending one of WINZ’s week-long IN2WRK courses, writing my CV (and helping others with theirs, as many of them had never done one before and some didn’t even know how to use a computer) and sending it out to countless retail outlets, food preperation jobs and whatever else I thought I could do. The co-ordinator said I’d be a great secretary, until I told her that my disability makes it difficult for me to use phones – especially with strangers. All of that resulted in an interview at Whitcoulls. I didn’t get the job because of the way I’d left my last ones: in denial, trying to work through panic attacks, once passing out at work, and always moving on to the next job before the old one could fire me. I hadn’t wanted to admit I was sick. I hadn’t wanted to have to go onto a benefit, especially a sickness benefit. During that second attempt at working, I had another small breakdown, and that was probably when I really understood that teaching was far too high-stress a job for me to be able to handle.

Ironically, it was the February 22 earthquake that changed things. It turns out a job that doesn’t have an interview process, that doesn’t look up your previous employers and ask questions about how you parted, a job that is vitally important, a job that distracts you from the utter nightmare your city’s turned into, is really good at motivating you even through illness. That was what the Red Cross offered when it put out a request for hands to do data entry. Which isn’t to say it was perfect – I’m pretty damn certain it only exacerbated my PTSD, and I left work crying far more than once. We didn’t get much training and in fact none at all when the call centre moved to our office. But it was a very situational job, too, and in the end almost all staff were phased out by February 2013. My sister stayed; I didn’t. I’d already gone back to school part time, studying extramurally so I didn’t have to attend classes and only needed to keep track of assignment due dates and final exams. When I left the Red Cross for good I went full time at school, the first time I’d done anything full time since I was 20.

A few months later I was getting off the plane in Wellington. I wanted to get out from the rebuild, the crippled local government, the looming shadow of CERA. I knew a lot of people in Wellington who wouldn’t start conversations by asking how my house was or chat about problems with EQC. I stayed for a few days with two friends, then went to a hostel, then moved into a house. I bought a breadmaker and a computer screen and a panel heater. I went to a couple of tweet ups, got a pass to the zoo, and learned where at least six suburbs were.

Last October or so, I decided I should compound on those successes by getting some real treatment for my pre-existing conditions and the PTSD from the earthquakes. I asked my new doctor for a referral to the DHB psych services, and he said that I would probably be better served by the Phobic Trust, down in Newtown. Nowhere near my house, but in walking distance to the zoo, so after appointments I could settle down by visiting the tiny monkeys. The downside was, it’s expensive. The assessment was about $120, which I put on my credit card and had them fill out paperwork so I could claim it back from WINZ through a special needs grant. I applied for the disability allowance at about $60, which would cover almost half of the $129 a proper appointment costs. And, because things were starting to get pretty tense between me and the third flatmate and it was something that had been suggested several times before, I applied for the supported living payment, which used to be called the invalid’s benefit.

Those forms were all taken to WINZ on December 5. The woman I was dealing with went through each one and had me initial some things I’d crossed out and tick a couple of boxes I’d missed. She double-checked I was allowed to get the SLP while studying. She told me that I had everything I needed. She went to scan everything in, kept some of it, and gave the rest back. She told me I’d hear shortly.

It took two weeks to find out my SLP had been declined.

It took over a month to find out that, in fact, I did not provide enough information for the disability allowance. They have so many different forms it’s almost impossible to know which ones need to be combined.

It’s now been about six weeks of sending emails back and forth, consulting benefit rights advocates, writing letters requesting appeals, and waiting. Always waiting. During those six weeks I think I’ve spent more time crying than I had since I moved here. I’ve considered suicide. I have two plans that I know are workable and plausible. I’ve had to put food on my credit card because I was so low on fruit, or dairy, or meat, I’ve had days in a row where I wasn’t eating because I couldn’t even leave my room knowing anyone else was home, I’ve sat with my phone in my hand trying to ring crisis lines and not able to do so (see aforementioned trouble with phones). I’ve had fleeting fantasies of turning up at the WINZ office and doing… something, god knows what, that would convince them I need help. (Preferably financial, but practically more likely psychiatric or criminal.) I’ve sent long emotional emails to them. I’ve sat on Trademe poring through properties to rent that I’d never be able to afford on my current budget. Right now I’m on the first day of a “1-2 day” extenstion to a history essay I’ve been looking forward to writing for the whole summer semester. I’ve nearly hit the word count, but I can tell it’s mediocre, it’s shallow, it doesn’t explore the things I want it to. I still need to do all the citations. I can hardly look at it.

WINZ is killing me. I don’t know whether or not I mean that literally, but emotionally it’s true. I honestly can’t see beyond a point where I have to drop out of school for the third time. Either I graduate in 2015 and get to find work, or… I don’t know.

Under the current system you can be denied an SLP by someone with no medical training. It might be a nurse, or it might be a social worker or teacher. They don’t have to tell you this and most people don’t know. They’re supposed to tell you you can appeal, but don’t always (they didn’t tell me, but I knew from other sources). If I don’t win the appeal I have a choice of the Student Allowance (for which I must either maintain full-time status or apply for limited full-time) or the Jobseekers Allowance with Medical Capacity Certicate saying I’m unable to look for work – but I won’t be allowed to study, either. Most students receiving the allowance top it up with part time work, something I can’t possibly do, nor can I borrow the living costs component of the Student Loan because the allowance makes me ineligible.

The worst thing is, through all of this I haven’t been able to access any professional emotional support. That specialist I want to see? Yeah, an appointment is literally more than half of my income, and my rent is already at three fifths. It’s impossible. So I’m struggling against a government agency with just my friends to help me, while they don’t even have to pay a doctor to decide I’m not sick enough for a slightly-more-livable income.

What we have to look forward to

If you’ve been following changes to the welfare system over the last year or two you’ll be aware of the increasing standards for qualification for the invalid’s benefit (sorry, Supported Living Payment) and may also have seen a couple of news reports about long term disabled clients being referred to private companies for assessments. This is following the footsteps of the UK’s disability support system, where Atos, a French company that bills itself as “business consultants”, is in charge of assessing whether claimants are fit for work. I’ve posted on this issue before (try the ableism category if you want to see those posts) but now I have a whole heap of new links I’ve been reading!

Firstly a personal account: Part 1, where he applies for the JSA (we have the same thing here – Job Seeker’s Allowance), followed by Part 2 where he tries for the WCA (I believe this is our SLP).

The main reading for today, though, is this piece from the Guardian. The article itself is very illuminating, describing the statistics and ratios Atos uses to determine how many people are allowed to be classed as unfit for work (about one a week, it seems – 97% are supposed to be found to be ready for work within two years), but the comments very much add to it, with a lot more perspectives on what the assessments are like for claimants and the many bad calls they’ve made. Some people also have some more interesting numbers, because us disabled folk like to educate ourselves on the systems that control our lives. I would probably allow yourself a while to get through this because you might need to take a few breaks from the unrelenting horror show.

I have very little doubt that if National gets back into government next year we will head further down this path, even if not the whole way. The changes already made very much resemble the ideology of the UK government and we’re already seeing the introduction of private companies. Somewhere in the comments is an excellent point: Private companies can be taken to task, legally, by their shareholders for not making every effort to increase profits. This makes them fundamentally incompatible with providing a suitable service to the disabled when they’re getting paid for getting people off disability benefits. They are legally required not to act in the claimants’ best interests.

The political is personal

I haven’t posted anything about the death of Nelson Mandela, because there is nothing I could possibly say that is worth hearing from me. I marked the occasion on Twitter with the simple, “Kua hinga te totara nui.” Later I posted a wry, “Nelson Mandela was the Nelson Mandela of our times” in response to white Westerners comparing Mandela to all their personal white heroes.

I’ve read around a bit. It seems that the right thinks that the left is politicising his death by criticising the make up of the delegation sent to the memorial. I’ve seen the response that the right politicised it when Key was advised not to take John Minto.

I disagree. Nelson Mandela’s death was politicised long before he died. It may even have been done before he was born. It was politicised when the lives of certain parts of the population became not their own, but something to legislate and control and use to froth up electoral sentiment. Feminism has “the personal is political” to recognise this exact phenomenon, because women’s bodies are political – how they dress, what medication they take, what jobs they can have, and the looming spectre of *whispers* abortion. People with disabilities are political too, because so many of them require dependent income, so that politicians and managerial staff and policy analysts are justified in debating who should be working or not working, what is classed as a disability rather than “poor choices”, how much aid people should have, whether it’s money or goods, how much oversight there should be in how it’s spent. There are probably people who think I might not really be doing the proper thing in drawing a student loan. Since I left high school I’ve had three periods of studying (dropped out, failed out, current) and three periods of working (dropped out, failed out, contract ended in February) in between the looooooong periods of not being able to do anything. Should that track record count against me? There’s a “what’s fair” debate, and there’s also a “what’s best public policy?” debate. I didn’t create either of them. Those debates existed long before I came along, with my disabilities, my trans*ness, my annoyingly female body and reproductive system.

Nelson Mandela’s death is political because his life was political. His body was political. His image was so political that it was banned for quarter of a century. The people who made him political are not those engaged in “identity politics”, they are those that created the need for identity politics in the first place through stifling legislation attempting to control the lives of any group that might one day threaten their power – Native Americans, black slaves, women, anyone who does not belong. Their expressions of emotion, of wants and desires that cannot be understood by the white male elite, are over-medicalised – drapetomania, hysteria, homosexuality and transvestism as mental disorders, “shamanism” as psychotic illness, and in medicalising them they assume a paternal over-interest codified into law.

This isn’t a minor quibble. Straight white men, for the most part, simply do not understand what it’s like to know that any discussion of the circumstances of your life can be shut down with “Now, let’s not get political.” I’m sorry, was I talking about electoral candidate selection? Was I citing Question Time? No! I was talking about how people with disabilities need enough to live on and the fact that the recommended course of treatment in biomedicine for GID is vastly out of reach for most people affected by it. The fact that these things rely on political interest to fix is not my problem, it’s yours.

Stigma and mental illness

At first I didn’t have words for the story about the Italian woman whose baby was taken by UK social services. Yesterday I was planning things out but back pain took priority. As it turns out I’m glad I waited because there are more pieces out now that fill in some information, including a transcript of the placement hearing. This isn’t because the new information changes my initial reaction, but it does add to it, as do some of the opinions other people have expressed.

The basic facts of the case are: an Italian woman, whose name has been given in Italian media but not English, has a history of bipolar disorder. She has two previous children who are in the custody of her parents due to her illness. She has had medication but taken it sporadically, as people with mental illness often do – once the medication begins to work, you feel better, so you think you don’t need it anymore and stop taking it. Rinse and repeat. This is incidentally another symptom of stigma, as people don’t want to accept that they have to rely on medication long term. Accepting that you’ll be taking mood stabilising drugs for possibly the rest of your life is utterly terrifying. Everywhere you hear people talking about “Oh, I don’t want to take drugs for it” and opinion pieces about over-medicalisation and Big Pharma. It’s a point of shame. At any rate, this woman came to the UK in the first part of 2012, while pregnant to a Senegalese national, and while there suffered a bad episode; part of the new information that’s come out indicates that it was much worse than initially reported, though I’d already gotten the impression that it was fairly bad due to familiarity with mental illness. I’m not someone who hears “panic attack” in correlation with “five weeks in hospital” and imagines she just had a couple of hours of being upset. So, on June 13 of 2012 she was committed to care. On August 23, the Court of Protection issued an order giving permission for a caesarian section to be performed. Later that same day, the Local Authority took the baby daughter into care. This is another of the important points of clarification – it was not social workers who ordered the C-section. It was doctors. However, this may actually be worse, because there is also a long history in the medical profession of racism and sexism and often I think people are willing to criticise social workers when they won’t criticise doctors, because doctors can talk about medical necessity that’s beyond what laymen understand. Doctors are also much more able to act on their patriarchal notions. In the first half of the twentieth century, it wasn’t social workers sterilising the mentally ill who were deemed unsuitable to breed, it was doctors. So far I have not seen any discussion for the reasons given for the C-section, and I hope someone finds the transcript of the session in the Court of Protection, because I’d be interested to know. Quite possibly it was for strictly medical reasons, but right now we have nothing that says one way or the other.

So, at some point after the birth the mother returned to Italy. She was still very unwell at that point but kept telling staff at the hospital she wanted to go home. (She also said she wanted her baby, but apparently she was ok to make one decision and not the other.) The judge in the placement transcript is pretty critical of the doctors letting this happen and also because it seems the doctors’ reports indicated at that point that she was in better health than she was, whereas her doctors in Italy gave a quite different picture. During this period of treatment she realised the seriousness of her condition, that she needed to stay on her medication, and that she could not take care of any of her children if she didn’t. By the time of the placement hearing, which was on February 1 in 2013, she was still on her medication and apparently very stable. The transcript repeatedly emphasises how coherent and clear and even forceful she is at conveying her wishes. At this point the daughter in question was nearly six months old, which is apparently the critical consideration for the judge in the placement hearing.

You see, the expert advice is that a child should be in a stable situation by the time they are nine months old. The mother’s suggestion was that if the courts did not agree that she could take her baby home straight away, which she seemed to accept was likely, she could be placed essentially in the foster system for up to perhaps a year so that the mother could prove she was able to stay on her medication. At this point she was also securely employed and housed, had a medical support system, and was on much better terms with her family. Other possibilities were that the baby’s father could take her (this was deemed a “non-starter” as he was an overstayer in Italy) or in one piece it mentions that a family friend in the USA, who elsewhere is named as a relative, was willing to take her. On the other hand, if she was placed into the UK adoption system, finding a suitable family would be complicated by her unusual racial mix, her parents’ different religious backgrounds, and the fact that there may be a genetic tendency towards mental instability. (Possible, future disability.)

So at this point we’re in a court where a child’s birth mother is in complete control of her faculties, she has a stable situation, a secure income, family support, medical support, oh and also she’s not a citizen of this country and doesn’t plan to live there, and the only connection the child has with this country is that she was born there while her mother was visiting. But because it’s ideal that a baby should have a stable situation by nine months of age, and the mother might, sometime in the future, have a relapse, the judge decides the best course of action is to waive the requirement for parental consent to adoption and place the child, permanently, with a British family who do not share her racial or national background. So this woman, despite being basically in the best place she’s been in quite a number of years, has now had to go through a surgery that she did not consent to (which may have been necessary but was apparently not properly explained to her first by her account, as she says she did not know it was going to happen), and had her child placed for an adoption that she did not consent to (because it wasn’t ideal for the child to be placed in temporary foster care while her mother proved she wasn’t at risk of relapsing again).

Apparently some people, including identified feminists, think this is A-OK now. It wasn’t social workers who ordered the C-section, so everything’s dandy. The bipolar was worse than they assumed from the original phrasing, so the mother shouldn’t get a say in her child’s future. The father’s an undocumented immigrant of colour into Italy, so he’s not capable of taking custody. These things apparently make it all good for British doctors and British courts to perform non-consensual surgery on a foreign woman and place her brown child into permanent care in a country she has no connection with, with a family who don’t share her background. Oh, her mother can visit her, but even in Europe where travel is cheaper that’s still a huge cost, and still crosses national borders,  meaning any number of things could prevent free movement. And if this decision caused or causes her mother to relapse I’m sure that will be held up as proof that it was the right decision, not an unfair decision that had a hugely negative impact on someone who was turning her life around.

I have read a lot of the new information on this case today. I’ve read pieces opposed to what happened, I’ve read pieces in favour, I’ve read the original transcripts. Nothing I’ve read has changed my mind. The fact that mentally ill women can have a foreign country perform surgery on them, take their children into custody and place them into adoption without consent is terrifying and shameful, even if there’s a medical rationalisation, even if she had a breakdown, even if the father is a West African overstayer. No where in the transcript does the possibility of the child being placed into care in Italy come up, either. Why is it better for her to be legally adopted by a British family in the UK than by Italians in Italy? Granted, I don’t know what the foster and adoptive system in Italy is like, but this wasn’t even discussed as a possibility. Why did she need a C-section? Did she have complications, was the best medication too risky to take during pregnancy, did the doctors just think a mentally ill foreign woman shouldn’t have control over a baby? No idea. Even if these questions are answered, they don’t materially change how fucked up this case is from the perspective of people who actually know what it’s like to live with a severe mental illness. I imagine it’s worse for POC, because the racial element shouldn’t be overlooked.

The trap of red tape

One of the things about mental illness is that it makes it really hard to do things. Case in point: I have a folder with applications for about three different WINZ grants, which I desperately want (even need), but I’ve been working on completing them over a period of several weeks. It’s hard to describe exactly how difficult this process is. For starters, just pulling them out to go over reminds me of every single thing I know about the current “low welfare rolls = success” policy, which considering I study social policy and have a particular interest in disability policy is quite a bit. Admittedly some of it is from overseas, particularly the UK, but reminding myself of that doesn’t necessarily help because then the other part of my brain points out the slow creep we’re seeing here towards the same policies as the UK. We already have private contractors who get paid for taking people off the SLP, and if they only work with some “clients” now, when is that going to change? (I hate the terminology of the market that social welfare has adopted. We’re not clients. We’re not purchasing a service. We’re citizens who pay taxes into the system and who almost everyone but the most hardcore libertarian agrees the government has a responsibility to. And yes, even people who’ve never worked pay taxes. Benefits are taxed for starters, and there’s also GST.)

Every piece of certification they ask for also requires an effort to get hold of. If you have a mental illness that inhibits motivation, makes social interaction difficult, increases fatigue, makes it hard for you to understand beaurocracy-speak or any number of other things, this isn’t going to be as simple as ringing a place up and just asking for it. Sometimes the people who need to give you something don’t actually understand exactly what it is, so you have to explain it to them, if you even know yourself. You have to constantly fight the internalised messages that tell you you don’t actually deserve to get onto the benefit anyway, you’re just a hypochondriac out to rout the system, you’re lazy, you could do this if you wanted to, and that makes you a bit defensive and a bit unwilling to be too demanding, which increases the chances that you’ll get the wrong thing and have to go back, and going back is even harder because now you’re just being a drain on their resources. Like, apparently there are two different forms for the disability allowance. I have the standard one signed by my doctor, but when I went for a needs assessment at the Phobic Trust they gave me one specifically for counseling with their section filled out, and now I have to take that to my doctor. I can’t just use the one that’s already filled out. And going around to physically get things that you need costs you both time and money. I’ve complained before about how expensive public transport in Wellington is – if I need to go and get a document from the Phobic Trust, it involves a train trip and a bus trip each way, all placed on discount cards that give me about 10% off the cash price or whatever, but it still adds up to $14. Fourteen dollars to get part of what I need for a disability allowance that tops out at $60 a week (and which will pay for something that’s $129 every fortnight, who can do basic math here?), or a special needs grant for a total of $119 to reimburse the cost of the needs assessment which I had to put on my credit card, or a supported living payment of about $255 a week.

Right now, the very last things I need are: the section asking my income for the last 52 weeks, which I’ve decided I’m going to estimate because while I could find out on the IRD website, I can’t create an account because I already have one under my IRD number but they can’t tell me my forgotten log in details because there’s no account under my IRD number and honestly I just cannot with calling them (they have a service for hearing impaired people to contact them… by fax); my GP to fill out his section of the disability allowance for counseling form, complete a work capacity certificate, and write a medical certificate. I’ve written him a letter explaining what I need done (1/3 of a page) and then justifying why I need this and what I could do if I had it and how bad my current situation will become if it stretches out for two more years (2/3 of a page), and I still kind of want to add more to it. Now I just have to take all of those forms and the letter in to the clinic and ask if he can do them between patients or if I need to make an appointment. This is literally the last step before I can finally bring everything to WINZ, and I’ve been putting it off since mid-yesterday morning. I’m scared that the waiting room will be crowded and my questions will be wasting their time. I’m scared that my doctor doesn’t think I’m that sick and will see me as some jumped up scrounger trying to play the system. I haven’t been here that long, I don’t have the kind of relationship with any medical professionals that I did with my last GP, but I have been here long enough that I can’t get anything to support my application from my last GP. I’m not her patient anymore. I’m scared my doctor will be fine with filling everything out but will tick something that WINZ thinks is wrong and decline me for the SLP, and if that happens then I can’t just blame myself for being lazy, it will be an actual external decision by a gatekeeper that I have no control over and which is in some ways a judgement of me, and that’s actually pretty terrifying. It would be easier to not get it because I “couldn’t be bothered” finishing the application than to be declined, I think. I’m scared he’ll say, or they’ll say, or someone will say, that my condition isn’t expected to last at this severity for at least two years and therefore I don’t qualify no matter how bad I think it is now, but don’t worry we’ll just put you on Jobseekers with a medical exemption (same money I’m getting now but can’t study on it, which might mess up my student allowance and leave me having to deal with the fallout). And while I can appeal a decision, if just applying for it is this hard, how hard would it be to say “actually, I think you’re wrong, and I demand someone take the time to review my case”?

Rationally I can recognise that I’m in a pretty ragged place emotionally, that this is a little bit like I felt in the lead up to the nervous breakdown I had when I was about 20, and that if I want help I have to jump through the hoops to get it. But the beast of mental illness is that it’s inherently not rational. Everyone else sees these enormous hoops a foot or two off the ground, but to me they’re mini hula hoops the height of my head, oh and also they’re on fire. Meanwhile every time I have to, I don’t know, talk to someone or perform a simple task, I just want to yell, “Oh my god leave me alone, can’t you see I have these fiery hoops of death to get through and I’m trying to figure out how to keep from setting myself alight???” Which, to an outside observer, would look absolutely crazy.