Access by Various artists

I was born with skin which was often too tight, too brittle, too burning and too itchy. My mother spent a great deal of time trying to alleviate the effects of my eczema including regular bedtime rituals of which I have vivid sensory memories, even though I was still a preschooler.

Before bed my limbs, body and face were smeared with viscous black coal tar ointment that smelt like freshly laid asphalt. (I could never understand why my father’s coal tar soap was orange and smelled nicer). My mother then wrapped me in yards of damp bandage. Lastly she tied cotton mitts on my hands with ribbons.

Then she would get a large bottle with a sugar-encrusted rim from the cupboard. The metallic spoon taste mingled with the sickly but bitter Phenergan syrup. Two special bedtime companions were my soft toys Flopsy Mopsy (a rabbit of course) and Kittie. Their original colours were indiscernible under their patina of grease from the oozing coal tar.

Whether from the medical conditions or otherwise, I was a chronically shy child and my mother struggled to disentangle my fingers from her skirt when leaving me at Playcentre or with friends. So beside the bottle of Phenergan was another brown glass container which contained large green tablets. They were braveness pills and the longer you sucked them the braver you got.

So what was the science behind these treatments? Coal tar is a liquid by product from the process of turning coal into a product called coke which was used in the steel industry. Its skin-soothing properties have been known and widely used for at least 150 years, despite its strong smell and reputation for staining. It was standard emollient treatment for eczema when I was young in the days before steroids were mainstream. There still seems to be uncertainty about why it works including a theory that it limits DNA reproduction. The grease is smeared on skin damp from the water of a bath or shower and helps keeps that moisture in. Wet bandages prolong the effect.

My father’s coal tar was made from the same product but was sold for its antiseptic properties and somehow the smell and colour were altered to be much more pleasant. That soap is still produced, although no longer allowed without prescription in many countries as coal tar has been implicated in skin cancer. (I have had a melanoma removed and never linked it to those years of coal tar; my father used the soap for 84 years with no ill effect). The soap is now produced in Turkey with tea tree oil as its vital ingredient.

Phenergan (Promethazine hydrochloride) was developed over 60 years ago as an antihistamine for those with allergies, rashes, hives, nausea and motion sickness. Histamine is produced by the body as a reaction to person-specific allergens ‒ foreign substances which the body encounters by inhalation, ingesting or through the skin ‒ and antihistamines help reduce the histamine allergic reaction. Phenergan’s main side effect is drowsiness, which suited my mother. The medicine has a variety of names these days and is administered as syrup or tablet. It is now not recommended for children under two, nor be used for no longer than ten days in a row. The dose for children is five mls with a maximum of fifteen mls in 24 hours. I remember my dose as at least one large spoon, sometimes two. But my mother is no longer around to ask.

My mother was astute with her use of braveness pills and their placebo effect. She found large pleasant tasting sweets (not identifiable as such by me), with a hint of sherbet and peppermint and which required a lot of sucking, enhancing and prolonging the placebo aspect. They worked well and I have used them successfully with my own children.

As a shy, eczematic child, I was fortunate to have a mother who was both patient and innovative.

We, parents in their declining years, have a family member who is a 40 year-old male with disability. A couple of weeks ago, he screwed up his courage to the sticking point – in order to overcome the barrier of extreme anxiety – and accepted the offer of work, in an effort to improve his own wellbeing and  to contribute to the community as a whole.

The work was to deliver circulars and free local papers. A three-day slot was provided for the deliveries to be completed. It was understood that the payment would be $30, so about two hours work was expected when applying the minimum hourly rate.

The following day the papers arrived, later than agreed, so this put pressure on the timeframe. There were 10 different circulars running adverts for the well-known big companies. The weight of the papers was about 70kg (measured by using bathroom scales). They were promptly sorted by the family member and delivered in two trips on foot out of his own back pack.

The following morning, another batch of papers, part of the same job but still to be delivered, was found on the doorstep. They were the Hutt News and the Regional News, weighing around 50kgs. This time the delivery required two adults and the family car had to be used because of practicalities and the bulk of the papers involved – the alternative was multiple trips on foot involving extended time. The large backpack just did not have the necessary capacity.

More than 250 addresses were delivered to. The total time committed to the work was 10.47 hours and the expense for the car at IRD rates of 74 cents/km totalled $5. This makes the true cost of the work to be about $190.00 at the minimum hourly rate of $14.75.

The work experience served to accentuate extreme anxiety for the disabled person and it was necessary to advise the other party to the contract that further service could not be provided.

If $30 is the final sum that is paid (my understanding is that payment is still awaited but that it is likely to be $20 now, not $30), the actual hourly rate based on $30 will equate to under $3/hr for a 40 year old man who has contributed strenuous manual labor. Does this make sense, and is it right and just?

It seems to me that the ‘free economy’ has almost achieved its goal; that is competition has run its course to the point where human rights in Gods Own (NZ) are being contravened. This is because some of its citizens are now doing strenuous manual labour for almost nothing. If payment for the work is not made it will be less than nothing – at least $5.00 for the use of the family car and backpack has been expended. My guess is that this is not an isolated case.

I have just been watching a TV documentary about the “Death Railway” of Burma (1942/43), where men were worked, whipped and starved to death in order to support the economy. Is NZ unwittingly and blithely going down the same track? It looks as though it might be. After all I thought I heard the Chief Economist at the BNZ saying today that the NZ economy is doing well ..."lots of ticks on the right side of the ledger". What about the left side, where we might find the hearts and minds of the people that are the neediest?

Halfway through October, my family had the experience of a planned power outage and it led me to wonder what people generally think the provisions are in New Zealand for medically dependent people, and if my expectations are unreasonable.

What happened was a simple planned power outage set for 11:30pm to 4:30 am on a week night, to do essential network maintenance and timed to cause minimal disturbance for most people in our neighbourhood.

We were initially informed by our electricity retailer, Powershop, in an email which said those requiring electricity for medical purposes should phone them to discuss their options. I did that, and was told that there were no options; it was out of their hands, nothing they could do, it wasn’t them it was United Networks, their supplier.

Next we got a letter in the post. Two identical ones actually, in separate envelopes. This was from Vector (who own United Networks) to tell us about the outage. The letter said to contact our health provider in case of reliance on electrically operated medical equipment.

I have a family member who needs a Bipap machine to breathe whenever she lies down. Back in the day there’d have been a tracheotomy and a ventilator. These days, with the advent of BiPap, respiratory conditions can often be managed in a less traumatic and invasive way, and life goes on without any great fuss. She isn’t medically dependent to the degree that she’d die in minutes if the BiPap machine stopped working, like this person, but there would be serious medical consequences.

So I contacted the respiratory department of the hospital responsible for our machine, explained about the planned power outage and asked if they could supply a battery for the machine. No was the answer, but you can come in to hospital for the night.

For many reasons, the thought of another night in hospital was singularly unappealing, so I continued to explore our options, from spending the night in a motel or staying up through the power cut, to hiring a generator.

I phoned two of the agencies involved in supporting us by channelling Ministry of Health funding. Manawanui in Charge, our Individualised Funding Host, told me that Vector wasn’t allowed to cut our power off (both untrue and unhelpful). Taikura Trust, our Needs Assessment and Support Co-ordination agency said the same thing and went so far as to phone Vector on our behalf. I was surprised by the stance taken by these two support agencies.

Subsequent discussions with a representative of Vector ended with an emphatic “this is not our responsibility, if there is medical dependency, responsibility lies with the medical people, we’ve given you advanced notice so that you can sort something out with them”.

From Vector’s perspective, planned outages are a fact of life, you can’t do some of the essential maintenance on live equipment, and there is no guarantee of supply. Perhaps there should be (except for unforeseeable events).  Maybe the power companies should be made responsible. I don’t know.

Phone calls continued.  I was repeatedly treated like an idiot, asked if I’d rung the power company, and surely I must have friends or family who could put us up for the night (friends and family with spare beds and wheelchair-accessible homes?).  I was told to go and see our GP (at whose expense? And what could he possibly do?).

I rang a hire company and checked out the cost of hiring an inverter generator that could run this expensive medical equipment safely. $104 - surely a lot cheaper than a night in hospital and considerably less difficult for us. I should explain that a night spent anywhere but at home involves packing, unpacking and setting up  an array of essential equipment, (twice, once there and once back home) on top of the stress and fatigue of the journey and the experience. It isn’t just throw a few clothes in a bag and go.

I contacted the Ministry for Social Development. They said they might be able to lend us money to cover the hire cost – if we could provide written proof that no one else would help – but it would have to be paid back.

I booked the inverter generator and sent a couple more emails, one of them to a CCS Disability Action policy co-ordinator. He offered to look into the issue when he had time but suggested I contact my MP. Why hadn’t I thought of that?

Well, my previous MP was Paula Bennett. My dealings with her office were unproductive. It just hadn’t occurred to me that my MP might be willing and able to help. I thought why not, can’t hurt, and sent a quick email to Phil Twyford, the incumbent for Te Atatu. Blow me down, he responded within a couple of hours and was on to it.

He spoke with management at my local DHB, they contacted me and agreed to reimburse me for the hire cost and to work with me to produce a clear plan for future outages. I haven’t yet been reimbursed or been involved in any planning with the DHB, but we all know how slowly the wheels do turn.

It was a good outcome for us, because $104 is a significant proportion of the weekly Supported Living Payment that my family member lives on, and I don’t think it is fair to expect a person on this level of income to have to pay this sort of cost for this sort of thing.   This planned power outage gave us yet another disability-related cost for which there is no provision, this time an urgent one.

It seems to me that better plans need to be in place and communicated to people. Not all medically dependent people will have to have continual electricity. People using oxygen concentrators, for example, can be supplied temporarily with small portable oxygen cylinders. But the back-up plan for medically dependent people needs to be workable, clear and known to all parties. And I don’t think taking up a hospital bed when there’s a simpler and cheaper option is sensible. What do you think?

Sometimes it can be very lonely in the disability sector. It feels like nobody understands, the world is against you and everything is a battle. However, many people are using the power of social media to fight back against this isolation.

When my son was diagnosed with autism in the 1990s I didn’t really know where to go for support or more information. I was given a folder of material which included a contact phone number of the local Autism NZ branch. I rang the number, left a message, and eventually met a small group of parents who became my knowledge base for autism and support network. We met regularly and sometimes got speakers along. Our children were at different ages and stages and it was very helpful for me – but the expertise circle was small. There were some books available on autism but they weren’t about New Zealand.

These days a parent of a child newly diagnosed with autism can go straight to one of numerous autism-specific Facebook groups and find information, ask questions and receive help and support 24/7 from a local and global community. The parent can ask about school support and behaviour issues or just talk about how tough things are in the middle of the night with a child who won’t sleep. They can ask about the numerous therapies or interventions which are offered on the internet and whether people have used them and had good or bad experiences.  There are often questions about what is out there for school support and how to access it.

Within minutes someone will usually type a reply and others will follow. These groups are usually well moderated by other parents or like-minded people who keep an eye on comments and try and keep them supportive. People who act as trolls – who try and subvert the generally helpful tone, or promote particular therapies ‒ are often quickly silenced. Things are generally pretty safe if you join and comment on well moderated sites and they usually have some rules displayed.

This connectivity in a community that is often geographically or socially isolated is really valuable. There can also be cross over with mainstream media. It is all part of that important relationship building that keeps us going.

My son is an adult now but a lot of our experience is still relevant to those just starting out. I also know how things are supposed to work so can tell people about aspects of our complex system such as NASC. There is a lot of misinformation out there and people not getting the support they are entitled to. For example, many people don’t know about things like the Child Disability Allowance, or that their child is legally entitled to go to the local school all day even without a teacher aide.

Busy Facebook sites I belong to (and for some a request to join is required) include Autism in NZ, Autism Action NZ, Aspergers Syndrome NZ and ViPs Inc NZ. The Disabled People’s Association (DPA) NZ Facebook page provides regular information about the Convention on the Rights of Persons with Disabilities and other disability topics locally and internationally – again it is well moderated and safe.

Social media is also linking with mainstream media in with community activism. Here’s an example.

In May 2013 there was a shocking headline and article in the Sunday Star Times:  ‘Boy left to eat grass at horror home’.

This was a report on extensive and ongoing abuse at a disability residential provider in Pukekawa. It was a major investigation by Kirsty Johnston. As health reporter, she started reading reports from the Health and Disability Commissioner and doing some investigating and asking questions of the Ministry of Health, and before long found that a lot was not right in the disability sector. She wrote a series of articles for the paper.

As a keen social media follower with an interest in disability policy I retweeted and shared these articles. I sent her an email thanking her for her work, as combatting disability abuse is a passion of mine. I often respond to journalists, particularly when they write articles about disability issues. There is often an email address with their byline. Usually I commend them but sometimes I gently chide them for disablist language or promoting disability as heroic or tragic. Kirsty eventually won a major journalism award for her work but by then was off on her OE.

By mid-2015 Kirsty was back and working at the NZ Herald. She was given the education round. It didn’t take her long to realise special education was a minefield as she heard regular reports about children who had missed out on funding or support. She found there had been significant underspending on special education by the Ministry of Education, and that there also just been an ‘update review’ on special education for the Ministry, although it had mainly involved professionals.

As we had had earlier contact about disability issues, she emailed me to ask for stories from parents in the special education system about how things were going for them. It was good journalism to try and find out what special education policies actually meant to families on the front line. So I offered to put her request onto some Facebook autism parent groups. She gave her contact details so people could contact her directly.

Straight away many angry parents told her how hard it was to get support.  Here is one of the first articles. Many schools were asking parents to pay for teacher aides or wouldn’t let the children come to school. It was hard to enrol disabled children in preschool. The stories kept coming. Kirsty wrote several articles in New Zealand’s biggest-circulation newspaper and the stories were taken up by other media. By the end of the week the head of the Ministry of Education had to respond.

In the background were ongoing rumblings on Facebook about the special education update review and lack of parental engagement. Some parents made appointments with senior people in the Ministry of Education’s Special Education and asked for the consultation to be extended. The Ministry eventually agreed, particularly now it had become headline material.

The dates, venues, background material were posted on Facebook and parents, teachers and other educational professionals reported back on the meetings as they were held around the country. The mood of the well-attended Wellington meeting that I attended was sad and angry. Some wrote their own letters to the Ministry and posted them online too. Hundreds of people attended these meetings over a few weeks. Progress will be reported back on those pages – and the review will not be forgotten.

Now there is a select committee review on some special education issues. Catherine Delahunty, the Green Party MP on the Education and Science Select committee, has been pushing for a review for several months. She was successful in getting an Inquiry into the identification and support for students with dyslexia, dyspraxia and autism. Kirsty Johnston has now analysed the first of these submissions  to go online.

But this is not the first select committee on special education that has been instigated and supported via social media activism.

Before we had Twitter and Facebook there were blogs and websites. And there was one called Humans started by our own Russell Brown. In 2008 the National Government won the election and straight away passed the legislation for National Standards without public scrutiny. Some of us were worried about the effects National Standards would have on children with autism and had a little campaign, reported on Humans, to get the Education and Science select committee of politicians from various parties to investigate. The committee asked Ministry of Education officials to report.

Eventually the committee recommended merely that they keep monitoring, and several years later our concerns have been proved correct – National Standards are not a good measure for the teaching and learning of autistic kids, and can be detrimental. National Standards results for all students including those on ORS have to be reported to the Ministry and schools are not allowed to indicate if any of the students have learning disabilities. So the league tables from the less inclusive schools look better. Blog sites like Humans are archived and here is my post about it from 2011 covering the select committee’s report.

This Access blog is another way to talk about disability after the Humans blog outlived its format.  Anyone can send in a blog post to Access on a disability topic. I have found it good way to report my research. There have been long discussions about disability policies such as Funded Family Care from people who are at the front line of these things and know the details. There is some great critique of Ministry of Health policies and wonderful personal stories. All communicated to an online audience including those who might not know much about disability issues but are now allies.

So there are numerous blogs and ways the disability community is connecting and sharing concerns, information and activism. Many organisations such as IHC with its Hot Issues e news and CCS Disability Action share information electronically about disability issues – which can then be further shared though social media.

It also doesn’t matter what your impairment is, as social media can generally be made accessible. One of the most active social media people I know is a young man in a wheelchair who uses blink technology to tweet and Facebook and post YouTube videos. There are, of course, still barriers for many New Zealanders such as lack of access to the internet, which is a political issue.

There are other social media tools developing, for example Loomio, which is a New Zealand social media initiative which came out of the Occupy movement, and is an easy way for many people to discuss specific topics.

So social media can play a big role in disability inclusion. Participation in social media is like posting on a public notice board. For those new to it, I would advise them to only interact with sites which have good moderation, anonymously if they prefer, and not to give out information they don’t want others to know. To share posts and material that they find useful or interesting. To keep things brief and not argue with trolls. To use social media to overcome isolation and promote inclusion.

Friday was the last day of the holidays. Not just the holidays – my holidays. After 17 and a half years of raising a child with special needs, I’m returning to full time work today.

So. This is it. That unimaginable day.

On Friday, I felt I should be tripping hand-in-hand with my children around all the holiday activities on offer in Christchurch. But Jasper was away with a friend having a lovely relaxing lakeside holiday and Claudia was still recovering from her latest general anesthetic, three days ago.

She’d been pretty much sleeping and dribbling ever since, eating (spaghetti, yoghurt, weet bix) but not drinking. My last day as a stay-at-home- Mum was spent bribing her with the iPad-for-sip-of-water trade off and a shit-load of washing. Also Typical. For us. Normal. And nothing like a blimmin’ holiday.

The offer of full-time work came suddenly and unexpectedly. I blinked for several moments and then in a miraculous moment of clarity realised that yes, I could.

Since moving to Christchurch we have been slowly but surely lining up the Claudia-transitioning-into-adulthood-ducks. That included moving into the individualised funding model of support and finding a wonderful support worker independently of an agency. Because we’re grown-ups now!

What Claudia’s increased independence from us has meant is that my time could be more my own again and I heard myself assuring my prospective employers that yes, I could indeed take up this, I was ready to return to work full time and things at home will be fine.

Looking back, this is a point we have been vaguely working towards – and here we are, with perfect timing.

And it has caused me to look back.

Raising a child with disabilities is bloody hard work.

Its physically and emotionally hard. It’s relentless.

It limits everything about your day – you are never in control of your own time when you are managing another whole human body in addition to your own.

It’s unpaid.

Most families need two incomes to live comfortably these days.

You’d need to be earning a huge amount to make paying someone else to care for your difficult child while you work worth everyone’s time and effort.

And coming home to a disabled child after a hard day’s work simply means you still have a night's work ahead of you.

Disabled kids are hard on relationships. Ordinary stresses; money, siblings, time, exhaustion are amplified through disability because there is no escape. You can’t change the one thing which would need to change to make things different.

Some sites quote stats as high as 80-90% divorce when a child has a disability.

How Steve and I have managed to stay together through all the usual stresses plus blended families and then disability is amazing. We may have dodged that statistic because we never married!

It is perfectly usual to find teacher aides at schools who are solo parents of children with disabilities. If they want to work and they’re not teachers themselves, it is a job which suits their own families and at which they are expert.

But they’re notoriously underpaid and, importantly, don’t get the break from disability that we all need.

Parents of children with disabilities are not supported enough. They’re just not.

Don’t tell me about how lucky we are in New Zealand because someone in England gets nothing like this support. That’s sad for them but nothing to do with here and I live HERE.

Don’t tell me we’re lucky it’s not the “old” days where “kiddies” like ours got put away because, ghastly as the old days were about many things, we’re not there now and I live NOW.

Don’t even tell me it’s lucky there’s two of us because I can tell you that when one of you is working full time and stressing about earning enough to support a large and demanding family – the division of labour becomes very traditional indeed!

And don’t tell me I’m lucky to get to be at home every day, because it’s not through choice.

I would have happily exchanged being able to do the work I love, adult company, work problems and some money for days at home washing faces, sheets and bums.

Families like ours need more help.

They need to be able to accept that help with dignity.

They need to be able to enroll their child at school without people wondering aloud how the normal children will cope with it.

They need the respite hours they are entitled to be allocated not according to how badly they present their situation, but by the actual reality of their conditions.

They need to be assessed by people who don’t make them feel judged and they need any allocated support to be actual minimum wages for people, not just a “contribution towards”.

Otherwise, what should be real support just becomes real extra money families have to spend to supplement the wages of people who they can’t actually afford to employ.

And these people are not just babysitters, because these families have members whose needs are usually complex and sometimes severe and always require high levels of attention and who are all more than usually vulnerable. For ever.

It’s hard to find people to fill that role for less than the minimum wage.

Families who live with disability need to have it understood by families that don’t live with disability that they don’t get breaks – so if you can give them one, do it, just them give them a bloody break.

Income splitting would go a long way to help families on a single income.

It wouldn’t be hard to manage; we’re all in the system anyway and it would be one instant way to help families manage better. But while people have talked about it, nothing has ever got done.

Like so many who end up representing us, in government, on councils, advocacy groups and school boards – so many people come in, fill in their time and then go.

And while they talk about real, positive change, the only thing that ever really changes is that those people move on, the next lot come in and begin their rounds of consultation, their reports that confirm we’re stressed and the systems are failing, then they argue about money, then they leave and the next lot come in and the process starts again.

And the families are still sitting there growing more cynical. Can you tell?

And the worst of it is that looking after someone with disability and not working for yourself and having a generation of strangers representing agencies coming to you to judge you and your family and your situation is just so bloody demoralising that I can only express all of this now it’s over.

Now I have a job of my own back in my chosen career, the opinions of those others matter less.

Their judgements matter less because I feel less beholden now and that’s staggering to me because I hadn’t realised how vulnerable we all have been through our vulnerable daughter.

Wish me luck for today! It will be a massive change for our family – but one we’re ready for.

Fiona Mckenzie blogs on family life at My Perils of Wisdom. This post is adapted from an original post there.