Access by Various artists

8

The Family Carers case – here we go again!

by Rosemary McDonald

Oh, yes indeedy, I would much rather be "out on the harbour" than sitting here in my bus with Peter snoring away behind me, writing yet again about this sorry issue.

Forever the multi- tasker, I have managed to combine this exercise with transfusing our failing deep-cycle batteries with mains power for a night, which also enables me to use this batteryless old laptop to keep anyone interested informed on the latest development in this ongoing saga.

First there was Hill v. IHC and HFA (way back in the mists of 2001), in which the then Complaints Review Tribunal found that the policy of not paying family carers was discriminatory.

IHC was told to go forth and discriminate no more.

Ruth Dyson announced that work was underway to address the issue of paying family carers and develop recommendations that were (she hoped) “fair and consistent across the board.”

It didn’t pan out that way and in 2008 the Atkinson case went to the Human Rights Review Tribunal.  The decision of the Tribunal was released on January 8 2010, finding:

“… practice and/or policy of excluding specified family members from payment for the provision of funded disability support services is inconsistent with section 19 of the New Zealand Bill of Rights Act 1990 in that it limits the right to freedom from discrimination, both directly and indirectly, on the grounds of family status, and is not, under s 5 of that Act, a justified limitation. “

The Misery of Health, of course, disagreed with the Decision of the Tribunal and took the issue to both the High Court and the Court of Appeal – losing resoundingly in both venues.

However, we need to back this bus up a wee bit in order to set the scene for the Spencer Case.

When the HRRT released its decision in January 2010 the Misery of Health successfully applied for a Suspension Order under s 92O (2) (d) of the Human Rights Act. Said section of the HRA states:

(d) to provide that any remedy granted has effect only prospectively or only from a date specified by the Tribunal:

In plain language, the order effectively enabled the policy (of not paying family carers) that had been found to be illegal to be legal for 12 months after the expiry of the appeal period or the final determination of an appeal, whichever event occurred sooner.

Conveniently (and of course completely coincidentally), the Appeal Court decision for Atkinson was released on May 14 2012 and the Ministry opted not to take the issue to the Supreme Court.  With a year up their sleeve under the Suspension Order, they had plenty of time to prepare for the May 2013 Budget reveal of the Part4 amendment to the Public Health and Disability Act – and we all remember that steaming little legislative pile.

However, Margaret Spencer (who was not an Atkinson plaintiff but had also made a complaint about the offending policy) took her own case to the High Court. Justice Winkelmann said of the Suspension Order...

In the event that I am wrong, and the Tribunal did have jurisdiction to make the suspension order with the effect that the Ministry’s policy was deemed lawful, I have nevertheless found that the order is so affected by procedural defects that it is a nullity. First, the Tribunal failed to consider all of the factors, listed in s 92P, that it was required to take into account in making an order under s 92O. In particular, it failed to consider the impact of the order on interested third parties. Secondly, given the unusual nature of the order sought, expressed as it was to retrospectively “suspend” the application of a declaration as to human rights, the Tribunal ought to have held a hearing before making the order. This would have enabled examination of the implications of the application for a suspension order, and allowed for the hearing of third party interests. Finally, I have found that the Tribunal was obliged to give reasons for its decision under s 116 of the Human Rights Act or, alternatively, by the principles of natural justice.

The Court of Appeal for Spencer was inclined to agree.

Margaret Spencer won her case, and on the back of that decision (as far as I can work out, because this is all getting very confusing!) other affected persons – ”third parties” – now have leave to take our case to the Court.

Yes, Peter and I are on the list of plaintiffs for this case. We made our first approach to the HRC in 2008 and were assured that the outcome of Atkinson would apply to us.  We have had to sit back and wait as patiently as possible to see if a window would open a crack to allow us and a handful of others to have a shot at justice.

For the record, had the Miserly played fair and accepted the HRRT decision in January 2010 and allowed Peter to use his allocation of Individualised Funding to pay me as his chosen carer we would not be claiming "back pay".  The slight (bearing in mind that as a couple,  my income would have affected Peter’s eligibility for the Supported Living Payment) but welcome increase in our household income would have at least helped us to be in a better position to cope with the debt we found ourselves in at the end of 2010.

We are being represented by the Office of Human Rights Proceedings, who successfully argued on behalf of the Atkinson plaintiffs.

Have no doubt; the Misery of Health and Crown Law are not going to make this easy.  They have already thrown down the gauntlet, and so far they are running true to form.

As we commented the other day to the other plaintiffs, Peter and I sat in on some of the Atkinson and Spencer hearings and participated in the "consultation" workshops run by the Miserly in late 2012, so we have had exposure to the contemptuous attitude of them and Crown Law for disabled New Zealanders and their chosen family carers and we thought we had been inoculated somewhat.  We are going to have to harden up, as having the toxicity aimed at us personally is more than a tad affective.

Having the opportunity to meet some of the other plaintiffs has been a privilege.

We are a diverse group, as diverse as the disability community itself, and yet our stories are almost boringly similar.

Some time ago I threatened to subject the PA community with a post entitled 'NASC: Not working for us, but abandoned the idea as it was just simply too damn depressing.

A new post, 'NASC ... is it working for anybody???' just might be in the pipeline. 

To leak just a dribble of Crown Law’s line of defence in our case: they are very keen to avoid any discussion of the issues all of us have had over the years with our respective NASCs.

Very, very keen.

They criticise the HRRT in Atkinson for stepping outside its scope by suggesting changes to the NASC system of which even Ruth Dyson said way back in 2001 ...

... for many, NASC is the main obstacle to people receiving good services rather than the entry point.

It was in that speech to the Southland IHC Parents Conference in October 2001 that Ruth Dyson noted that the Government’s exemption under s 151 of the Human Rights Act was expiring at the end of that year.  She set up the working group mentioned earlier to look into the issue of paying family carers and she also acknowledged that the Complaints Review Tribunal for Hill had ...

...acknowledged the rights of family members, including parents, to apply to be paid caregivers for one or more of their family.

FFS, that was 16 bloody years ago!

They all knew this was coming...and the best they could come up with was a shitty piece of legislation that the Court of Appeal for Spencer so eloquently described thus:

It contained a number of features that are traditionally regarded as being contrary to sound constitutional law and convention – on the Ministry’s interpretation it has retrospective effect, authorises discriminatory policies, withdraws rights of judicial review and access to the Tribunal and did not go through the normal Parliamentary Select Committee and other processes.

We are the fourth wave of plaintiffs taking this issue to the Tribunal or a Court. I’m thinking of the case as the Final Conflict.

We are not many.

There are six families.

There will be no fiscal apocalypse if we receive the justice we have waited nearly a decade for.

We are also not holding our collective breath.

We know our enemy all too well.

15

Being Inconvenient

by Fiona McKenzie

The thing about Twitter is that is forces you to choose your 140 characters carefully. 

To say what you really think as artfully and briefly as possible.

To be pithy. 

Understood. 

So when Nicky Wagner gazed out of her inner city high rise window at the twinkling harbour below and found herself trapped by circumstance, she shared her thoughts with her followers like this.

Screen Shot 2017-06-19 at 9.19.58 am

The jaunty little exclamation mark like a little kick in the guts. 

There was a bit of a social media outcry which drew the usual backlash of “lighten up” and “sheesh you can’t say anything these days”.

Then came Nicky Wagner’s half arsed “apology” about being sorry if she offended – without acknowledging why, given her portfolio of Disability Issues, her tweet was so tone deaf. 

She followed that with a weird justification saying “we all would rather have had the meetings out on the harbour”. 

Why? To get away from the annoying disabled people who can’t get onto boats?

She has revealed herself to be the wrong person for the job. 

Her tweets are as naive as they are patronising. I don’t want her representing issues pertaining to my daughter because I see no evidence she really gets it. 

Eighteen years ago when Claudia was born, we had to start apologising for the inconvenience of her. 

It wasn’t something we realized we had to do, until we got the signals from other people that our apologies were expected. 

Here are some things said and done to us to make sure we understood just how inconvenient we were:

  • A nurse complained that we had been in hospital so long we were in the way. 
  • A nurse complained Claudia's lack of understanding her made her job harder and the extra effort was annoying. 
  • A teacher complaining to us that Claudia had “mucked up all the books” which had been given to her to keep her quiet in a corner of the classroom. It was inconvenient to her that she had to reorganize them. We had no control over what happens at school.
  • A teacher complaining to us that jotting down information about Claudia’s day, including information about her toileting, was inconvenient to her. 
  • A school secretary sighing pointedly and telling us how inconvenient it was that a row of hooks had to be removed to accommodate a new accessible toilet for Claudia at school.
  • A teacher being furious at our lack of appreciation for a new changing area they had put into the school to accommodate our 5 year old. It was a baby change table attached to the wall. Completely unworkable for a primary school aged child. Taking it out again (why did they put it in?) was going to be horrendously inconvenient. 
  • Overhearing a Ministry of Education official being briefed on their next meeting (us) and hearing ourselves described as ‘more vexatious parents” and then having to sit through a meeting where there were serious issues without complaining too much because it hurts being called “vexatious” as if our concerns were annoying and trivial and not that real. 
  • Finding out that “vexatious parents” is in fact a term they use to condemn us all into a single pile of complainers.
  • Understanding that they see the meetings with people like us as an inconvenience they have to go through in order to appear concerned.
  • Being told (frequently) that events we have been invited to as a family, wouldn’t be “appropriate” for Claudia, that we might find her being there inconvenient. 
  • Harrumphing, eye rolling, staring at the supermarket regardless, but more so if we take too long to walk down the aisle or Claudia stands shouting at the frozen macaroni cheese or she tries to watch the scanning and numbers of the person ahead of us at the checkout.
  • Shushing at parades, outdoor performances and events because she’s excited to be out, while all around us the joyful squeals of young children are smiled at.

These are all reminders of how inconvenient she is to the lives of the able-bodied, the neuro-typical and the busy and active. Even those paid to be around her. 

“Sorry” “Sorry!” “I’m so sorry” “Okay, sorry about that” “Oops! Sorry!” 

So there she is, our Minister for Disability issues. Letting us know without room for misunderstanding, that disability is inconvenient for her. 

She’d rather not be having to deal with meetings about disability.

She’d rather be on the water! 

Sigh. How inconvenient it all is! 

Sorry Nicky 😦

But Hey! Cheer up! 

After your boring meetings and your annoying job representing issues that have no impact on YOUR life, you can get on with your sailing! Or mountain biking! Or having an afternoon off! 

But we can’t. Because disability IS our life. There is not one day in our lives where having a family member with disabilities hasn’t impacted our lives, dictated our decisions, diminished our potential. 

The biggest barrier to inclusion in our own life has always been other people’s attitude. Peoples attitudes make or break us. 

Her tweet felt like another little face-slapping sigh about how inconvenient people like my daughter are. 

We need someone as Minister who has an inkling of insight, a snotch of understanding, a skerrick of enthusiasm, a smidgeon of sincere appreciation for what it is for people like us. 

And our Prime Minister calls it a "storm in a teacup” 

No Nicky, no Bill – this isn’t a storm in a teacup. 

It’s a revelation that you are so woefully out of touch you can’t even see why.

Fiona McKenzie blogs at My Perils of Wisdom.

10

The Fall

by Chelle Hope

In every respect I’d rather just forget about the last month of my life and move on. I won’t be able to do that for months yet. The thought of that is so distressing. The psychological impact has been immense. And yet. It’s almost magical how the mind, like the body, can just get better following an acute trauma. Eventually. It just does. 

May 9th, 2017. One of those days I wish I could erase from my life entirely. There are a few of those. I’ve been reminded of all of them, one in particular, every day since the fall.

I decided to go over to Napier from Hastings because I wanted a change and I wanted to get some writing done. It had been a while since I’d properly spent any time out of Hastings, so a day trip was well overdue and, as usual, I was in a writing rut. Not so much writer’s block as just not feeling confident anything I had to say was worthy of committing to the page. That’s my natural state. The only way I can get over it is to make myself write something. 

I’d been feeling like I needed to get away from Hastings, too. I’d like to say it’s not you, it’s me. Hastings is a hard sell to those who aren’t attached to the place for some reason beyond, well, Hastings … and logic. I’m at peace with living here. That’s as good as it’s going to get. Sometimes I need to escape to feel ok with coming back.

I had a nice day. I had set myself up in Napier Library, which I find is a good place for me to write. Forget picturesque. Too distracting. I enjoy writing in institutional places surrounded by books and admin. It reminds

me of being back at university and that was my actual happy place for years. 

At the Napier library with my new journal. Everything is right with the world. I'm feeling not too bad. This was a good idea. pic.twitter.com/SIXnw9zVq8

— Broken Starfish (@ChelleNZ) May 9, 2017

I don’t even remember what I wrote now, what I was writing. I don’t think I was finished the first draft. It was something for my website. Something about disability. I remember I was very happy that I’d made the effort to travel the hour on the bus and that I’d got out and about and that I’d written something that I imagined might be quite good. 

It was nearing time for me to get a bus back to Hastings. Early evening. I didn’t want to catch the last bus. People with disabilities, we quite often need to allow room for error. Things go wrong. One can be having a very nice day and if you haven’t planned ahead, things can go a bit wrong or, well, something catastrophic might happen. Usually the former but you never can tell in advance.

I was a bit hungry. I don’t remember if I’d had a decent lunch but just around 4pm I was hungry enough that I didn’t want to wait to go home to eat. I’d have a snack. 

There was a sushi place I hadn’t seen before. It had been a long while since I’d been out and about in Napier. I liked the look of it. The place was closing. They only had containers of sushi, pre-packed for the convenience of the people running the place and fair enough, too. They wanted to get home, just as I did. 

They had nothing I wanted and the number of pieces in each container was too many. I told this to the person waiting patiently for me to select my sushi. I was ready to leave. She told me she had some salmon pieces out the back. How many did I want? Four. Parked up outside the sushi restaurant, I ate

all four pieces with gratitude. It was really good sushi. It was freshly made, I think. It had flavour that hadn’t yet been killed by a lengthy chilling. The rice was as soft as the salmon. It melted in my mouth and went down very well.

I guess I threw away the sushi container and I guess I turned to go. I really did need to catch the bus now. There was still one after this one, so I wasn’t in a rush but it would be good if I caught this bus. 

AND THEN…

I was wheeling at a reasonable pace, not fast but not dawdling. I felt happy about my day and it had ended well. I’d been productive, I’d got out of the house, I’d just eaten something a little bit special.

I didn’t feel much pain. Not consciously. The impact though was so much harder than anything I’ve experienced. It felt strange to have hit the ground that hard and not to be more than a little bit sore. I did feel very weird. I felt unwell. Not really nauseous. I was shaken. I didn’t feel right.

I wasn’t thrown forward as I usually am when I fall from my wheelchair. The front wheels of my wheelchair had caught on a step I hadn’t noticed. It was just the right height to hook the front wheels. Rather than being thrown forward and propelled out, I was driven into the ground with so much force that, while I didn’t feel any immediate pain, I let out a guttural, “Ahhhhhhh!” as first my right knee was thrust into the paved civic area immediately in front of the step, followed by my hands, which burned upon impact. Immediately, I felt a violent tingling throughout my stump, from my knee,

through to my hip and groin. It wasn’t registering as pain yet but it wasn’t right.

A guy who was painting, or doing construction, or cleaning windows, I’m not sure I knew at the time so I can't even remember if I’ve forgotten, he came over and asked if I was alright and asked what he could do. As is always the case when I fall, I just wanted to get back into my wheelchair as quickly as possible and find a place where I could assess the damage in private. 

The guy held my wheelchair for me and seemed very concerned. I assured him that I’d find somewhere to get checked out. He asked if I knew the closest local medical centre. I said, “Yes, thank you”. I didn’t really think of it at the time but the guy’s face looked more worried than I might have expected. My guess is the blood had probably rushed from my face. I wouldn’t realise it until later but I was in shock and would remain in that state for hours. My plan remained unchanged. I’d catch the bus back to Hastings. 

Fell very hard just now out of my wheelchair. My hands really hurt and they are very red but I landed on my palms, so they are ok.

— Broken Starfish (@ChelleNZ) May 9, 2017

As a paraplegic, my first priority when I fall is to check the bits of me that are functional so I know I can look after myself until I can either check the rest of my body for injuries, or get checked out by someone else if it’s a more serious accident. The next thing on the checklist is to check everything below my waist. The time between being reassured that my hands weren’t seriously hurt and knowing that I could still rotate a hurt shoulder, and beginning to worry about my stump was not long. It felt like one thought followed the other. 


AFTER THE FALL

I told the bus driver I’d like to get off at the hospital in Hastings. I’d got on the bus ok and a friend had offered, via Twitter, to meet me there. I hadn’t yet decided what to do but I figured I might as well get a ride to the hospital and I could sort out what to do from there. 

Two things happened when I fell that went unnoticed by me at the time: I went into survival mode and my decision making skills were desperately impaired. The two things aren’t compatible, I know. I remember wanting to get ‘sorted’ and not really knowing what that might look like.

My knee felt really weird and my hands hurt but I couldn’t tell if there was anything that needed to be treated, medically. I thought I might be wasting my time and everyone else’s if I were to go to Accident & Emergency. During the hour long journey back to Hastings on the bus, my thoughts vacillated between not wanting to waste time at A&E and not wanting to waste money at the doctors’ clinic where I’m a registered patient. I started to

feel really very cold and I wanted to lie down in my own bed and go to sleep. The thought occurred to me that I could just do that.

When I finally got to a bathroom at the hospital and could check myself over, there wasn’t anything much to see. My knee did have some light bruising and it looked a bit weird. A bit out of shape, somehow. I tried to remember what my knee had looked like before. I was fairly certain it didn’t look right. It was hot to the touch. While I’d only ever experienced this with infections before, I knew it had to mean something. 

My friend and I went through to A&E. I still wasn’t sure where I should be. The place looked busy and there was a long queue of patients to be triaged. I got into my friend’s car and went to see a doctor at the clinic where I am registered.

When the triage nurse had told the doctor on call what had happened, she told me she was getting ready to ask me why I didn't go straight to A&E, until she saw me. Then she understood completely. There didn’t appear to be anything too wrong. I was a bit sore and a lot shaken but she wasn’t convinced I’d seriously injured myself. I needed an x-ray of my knee anyway, just in case and x-ray was shut. After a short conversation where neither one of us were very confident on what ought to be done, reluctantly I said I had a feeling I should go back to A&E for an x-ray, rather than waiting until morning.

Back at A&E. It’s here that everything starts to get a bit fuzzy. The shock had properly set in and the strong tingling sensation I had felt from my hip to the end of my stump was slowly replaced with intolerable pain, which, days later, was finally replaced by a morphine haze. I don’t know when I was given some Panadol but it was hours after the accident. Even when I said I was in a lot of pain, a nurse brought up Sevredol as an option but I wasn’t given that, or anything that worked. 

I think a lot of assumptions are made in the acute treatment of lower limb pain for people with paraplegia. Perhaps it’s a subconscious idea that we shouldn’t feel pain as much as everyone else in certain areas of our bodies, so we don’t need the same treatment as able bodied people. Maybe it’s that we are subjected to a lot more pain than most and so learn to hide it. I shouldn’t extrapolate beyond my experience. I hope it’s just me.

When I was x-rayed, at

first they didn’t see anything much. They took a limited view x-ray of my knee, so it’s lucky that they picked up that my knee joint, going up into my femur was broken. I had broken my leg and I was hurting. 

I mentioned that I had some very bad bruising on the other leg that just wasn't going away. It covered a large area and was beginning to fade but it had been weeks. I thought while I was there, I should mention that. It was a good opportunity to get the other leg x-rayed, too. After all, aside from the old bruising and swelling, I’d landed on that leg as well.

The doctor grabbed my leg and with all his strength tried to shift the bones. I worried it might snap under his violent handling. I don’t know if this is usual practice in establishing if someone has a broken leg, but I’ll never forget it. He didn’t tell me what he was going to do and it made me extremely uncomfortable.

He said he didn’t believe the other leg was broken and my stump was wrapped up in a lot of padding and bandages. I was told to keep it immobilised this way. It was never going to work. It didn’t work. It fell off every time I used the bathroom, tried to get dressed, or transferred into or out of my wheelchair. 

After another long wait, I saw an orthopaedic surgeon. By this time my friend had gone home and my father had joined me. It was getting late. I was told again that I had broken my femur. The surgeon didn’t see any need for surgery given I don’t walk. I was sent home with a script for codeine. I had mentioned that I’d developed an addiction to Tramadol, a synthetic opioid much like morphine, years ago. I didn’t want to take Tramadol again. I didn’t really want to mention it because I’d had previous experience of being denied painkillers because of that disclosure. 

When I woke up the next morning, I was beside myself with pain. Two days later and my life had changed so completely I found it hard to relate to the person I had been two days previous. The pain was all consuming. I felt nauseous and I didn’t want to eat. My eyes felt wide and all I could think about was how I needed to find a way back to coping. 

I went back to my clinic. When I saw the doctor who had seen me originally, she praised me for my instincts. She was genuinely surprised at how badly I had hurt myself. A different doctor was on ‘the queue’, which you join if you don’t have an appointment. When I explained to him what had happened and he saw my x-rays

and I told him about my previous addiction, he listened and was very kind. He gave me a script for two different kinds of morphine, a slow release capsule to take twice a day and Sevredol to take every two hours if I needed it. He also gave me Nurofen and Panadol and told me to take all of them at the recommended dosages. I wanted to give him the longest hug. I think I might have even said as much.

The same doctor also decided that my stump should be immobilised. An attempt was made at a plaster cast splint which was then bandaged up. That fell off within a couple of hours after I got home, so I went back and one of the nurses gave me a knee splint, which I’ve been using since. It would be good to have one that fits better. It’s very long at the end so juts out unnecessarily beyond my stump. Still, it’s better than re-bandaging my stump over padding every time it comes off and offers much more support and stability.

There was also the matter of the massive pain I had felt in my hip since the fall. I had mentioned it before but I guess because my hips didn’t make contact with the ground, it was thought to be tendon and ligament damage. An x-ray was ordered of my hip which looked ok and I was reassured again that it was tendon and ligament damage. Having seen another orthopaedic surgeon recently, following a CT scan, they aren't so sure. I may have fractured my hip. It doesn’t really matter. I’m in enough pain for it to be fractured and I don't think they would operate if it were broken, so I’m treating it like it is. I’m going

for more x-rays soon to see if they can get a better view of the hip. 

I’m in much more pain than I was. I had to come off both of the morphine medications I was prescribed and weeks of immobility have left me sore all over my body. The side effects of the morphine were horrendous and I was becoming extremely ill. My state of mind was also suffering to the extent that I had become desperate within just a couple of the longest weeks. It all had a knock on effect. I developed the worst kidney infection I’ve had in my life. I needed a doctor, again, and I needed help. 

Because I was born with spina bifida, I have always been under the Ministry of Health as a client. I get cleaning services provided each week, which is a huge help. I needed more, though. I was told to ring the Ministry of Health organisation that administrates such things. I was told by them that I need to ring ACC. I was told off for not accepting help when the accident first happened. It’s true, I had a phone call from ACC shortly after the accident and after a short conversation, I had decided I didn’t need extra help. The wheels can fall off quickly, though. 

A few days prior to getting UTI symptoms, I was very unhappy and in pain but practically, I was coping. Days later, I was having thoughts too dark to express here. When I talked to Ministry of Health, I was told I shouldn’t feel like that just because of a kidney infection. Aside from the absurd notion that being so ill shouldn’t send one to a very dark place indeed, it wasn’t just the kidney infection. Everything had snowballed too quickly

for me to be able to adjust and I was a complete mess. 

ACC were fantastic. They have been great at every turn. I know this is not always the case for people and it hasn’t always been the case for me but I can say that in this instance, they have not put a foot wrong. I now have extra help. It turns out all I needed was for someone to come in three times a week on top of my usual scheduled housecleaning and help me get the house straightened up. That’s all it took for me to feel like I could cope and like I might actually get through this in one piece. I’m so relieved. I can concentrate entirely on myself and my recovery now. 

ACC are also reimbursing me for transport costs for hospital appointments, which is just as well. The mobility taxi van costs $40 for a 6km round trip to and from the hospital. I hardly ever catch taxis under normal circumstances but I can’t catch buses anymore. Since the fall, I’ve learnt of a policy that I wasn’t aware of before whereby drivers are no longer allowed to physically assist passengers who use wheelchairs on or off buses. If wheelchair users want to use a bus now and we might need assistance, we must bring someone with us who can help. I can sometimes wheel up and back down the ramp that folds out from the bus myself but I can never guarantee that the ramp will be at a gradient I can manage at either end of the journey, so I’ve had to stop using buses completely.

WHERE WAS I?

From the beginning, it was decided that I didn’t need surgery due to paraplegia. Three weeks following the fall, I saw

another orthopaedic surgeon and went armed with questions, one of which was, “Would I be able to crawl around and climb in and out of my wheelchair and off the floor onto chairs and couches?” These are all things I need to be able to do if I am to maintain the level of mobility I had before I fell. I’d had a lot of time to think and I realised that surgeons were focusing on the fact that I don’t ambulate and, to them, that meant I wouldn’t need surgery. 


It’s too late now to consider surgery because my leg has been healing for too long. The last orthopaedic surgeon I saw has said that we need to wait now to see how the leg heals and if it hasn’t healed well, they’ll consider re-breaking the femur and I’ll have to start again. As it is, there is a bend in my femur where it is out of alignment. I’m really hoping that’s not going to matter. 

Near the beginning of 2016, I was treated for PTSD by a psychologist. The treatment worked better than I had ever hoped and my life was getting better and better as I began to make small changes that over time made a huge difference to my quality of life.  I was really proud of the work that I’d done and the dividends it was paying. 

I’ve been through a lot in my life. Surgeries and medical procedures have gone badly wrong and I’ve been in life threatening situations too many times for my poor brain to cope with. Aside from nightmares and flashbacks and panic attacks and agoraphobia and anxiety and depression, all of which had become things I just had to cope with as well as I could, every medical procedure, no matter how minor or major, gave me an intense feeling of dread and terror. I’ve felt all of these symptoms creep back over the last few weeks. I’m quite hopeful that will be temporary but it’s a reminder of the precarious nature of physical and mental health and not to take either for granted.

I see as my main job now, while I’m healing, to look after my body and my mind as well as I can. Neither are in good shape but both will heal. Right now I’m not

having much fun but things are very slowly improving. I’m looking forward to not being in pain. I’m looking forward to the support I need going back to what it was. I’m looking forward to being able to get out and about without feeling tired and faint. I’m looking forward to getting back to the gym. I’m looking forward to getting my life back. Looking forward is keeping me going and giving me hope.

One day this will all be a memory. The human body is a wonderful thing.

7

What Your Child Needs To Know About Disability

by Chelle Hope

There is a big difference between the way children I am related to interact with me compared to the children of strangers who might encounter me for the first time, perhaps as they walk towards me on the street, or seeing me in a crowded restaurant, or waiting in line at the supermarket checkout.

While I don’t have any children myself, I do have nieces and nephews. The eldest is very nearly an adult, the youngest was brought in his mother’s arms in a rabbit onesie for a family meal at Easter.

Children who have grown up around me aren’t particularly curious about why I use a wheelchair or even what my disability is. I would guess that my sisters and other relatives have probably spoken to them and answered their questions about disability, if they have ever come up. I don’t know. We really haven’t discussed it. One of my nieces must have been nearly four when I had my leg amputated. She either didn’t notice or it didn’t bother her enough to ask about it.

The conversations I have with relatives don’t tend to focus much on disability and if they do, they are not usually about disability as an abstract concept. The conversations I have with family relate back to my life and their lives and our lives together. Disability is a big part of who I am, so it’s bound to come up but there is always a context to it with family.

With people who have not experienced disability first hand, it is a much more abstract concept. It is clear to me by dint of my experiences with able bodied strangers that people can find it difficult to know how to act around me. A lot of able bodied people aren’t really sure what to think and many have conveyed to me that they are nervous about saying the wrong thing. The net effect of this discomfort can be both frustrating and comical. Sometimes it is both at the same time. It’s hard sometimes just to exist in a world that isn’t sure how to process you as a concept.

It must be difficult then for parents or other caregivers to know just what to do or say when children in their care encounter a person with a disability, perhaps for the first time.

Often, especially if the child is very young, they will ask unapologetically loudly something like, “Why are they in a wheelchair?” More often than not, there will be a comment with pointing. Something like, “Hey, look!”

Try not to feel too embarrassed. We get it a lot. I can only speak for myself but I don’t find the genuine curiosity of children to be a problem at all. We are pretty used to answering questions or letting innocent comments float by. If you are embarrassed, the child might think there was something to be uncomfortable about and their future encounters with disabled people might become associated with that feeling. While I don’t enjoyed being stared at, being made to feel invisible by people who are doing their best not to stare is just as uncomfortable. Better to allow the child to feel comfortable with exploring the idea of difference.

For older children, I think it’s important to instil the idea that learning about people who are different to them is good and healthy but we should also be allowed our privacy. 

Throughout my life, I have had a great many inappropriate questions asked by both older children and adults who think that they are entitled to know things about me that are really none of their business. Nobody really needs to know a lot of the answers to questions asked in public to people with disabilities.

Questions like, “Do you sleep on a bed? How do you get into bed?” or “How do you go to the toilet?” really should be viewed as too personal and information given to children about the actual mechanics of bodily functions in people with disabilities should, in my view, be kept to a minimum. In my experience, children don’t really want to know those details anyway. What they want is for things to make sense to them.

You can model appropriate behaviour for children by not asking questions that come purely from curiosity and in particular those questions that might be personal or embarrassing to answer. Making jokes about a person’s disability, however well intentioned, is also not appropriate behaviour. Not all of us are going to have the same sense of humour and there is a very fine line between laughing with someone and at them if you don’t know a person.

It’s important that children view people with disabilities as people. They will most easily do this if you model that behaviour to them. Keep in mind that I likely have things to do just like you. I’m happy to answer simple questions from children but you might have to answer any questions requiring more time and thought, later. You know best what your child will understand. Lastly, please don’t yank your child away from me and tell them off if they ask me a question. I don’t want to be responsible for your child being told off for their curiosity.

While there are a few tips I can give parents and caregivers on how to teach a child about disability, I firmly believe that modelling things like an interest in diversity and difference, a curiosity in the world around us and respect for others is much more important and worthwhile than the specific content of any conversation you might have with a child about disability.

11

Stroppy parents and battling bigotry – what changes?

by Hilary Stace

A file of decades-old letters can be mesmerising. Especially in a quiet library or archive with 2017 locked outside. Fragile, handwritten letters, typed and faded carbon copies, annotated missives. Who wrote them, why, and what was happening? What energy, and battles motivated them to write and, significantly, keep this material for future researchers?

This is an historian’s happy place. But the serendipitous merging of research passions makes for an even better day. This happened to me recently and although the material dated from 1949 it still resonates.

Some topics entrap researchers. One of mine is Janet Fraser, the influential wife of Labour Prime Minister Peter Fraser. She died in midway through his term as Prime Minister, following which he lost much of his reformist spark.

Another of my favourite subjects is the history of the organisation now known as the IHC. Deborah Hill Cone wrote recently  that if there was a militant activist wing of the IHC she would join it. There is. They are called parents.

Stroppy parents founded the Intellectually Handicapped Children’s Parents’ Association in 1949 because they wanted schools and day programmes and community participation and rights and justice for their disabled children ‒ and for themselves too. They were supreme and fearless lobbyists. Generations of IHC parents since have continued this advocacy for their children, young and older – always striving to ensure a sustainable, good-enough life for when they are no longer around to lead the battle.

Janet Fraser, like her future husband, was born in Scotland and immigrated to New Zealand in the early years of the 20th century. Both staunch practical and intellectual socialists, they met in the political ferment that became the NZ Labour Party and soon became a partnership. She was married to someone else, although apparently separated, and had a young son so Janet could not marry Peter until her divorce came through. By then Peter had served a jail term as a wartime conscientious objector had been elected Member of Parliament for Wellington Central.

In another era, Janet would have been a Cabinet Minister, or even a Prime Minister. In those days when the activist left women made policy as a well as tea, she assisted the cause in less noteworthy ways. Those Labour women were a stroppy lot too. She was on the Hospital and numerous other boards and committees through the tough days of the Depression, and when Peter became Prime Minister she acted as his unofficial administrator and policy advisor, vetting visitors and bringing him meals during the famously long hours he worked. (Her granddaughter told me she was not the type of grandmother you hugged with floury hands.)

Her influence led to the decision to bring Polish refugee children to New Zealand, and numerous arts and health initiatives of the First Labour Government. She hosted a war time visit her of her friend Eleanor Roosevelt, before dying of TB in 1945. But as there was little publicly recorded about her (or indeed many of the Labour women and wives) history quietly forgot her.

The other day I was back immersed in the early days of the Intellectually Handicapped Children’s Parents Association in the extensive IHC collection held at the Turnbull Library, searching for historical evidence that the modern day IHC needed to honour a bequest.

Those stroppy parents who founded the IHCPA in October 1949, had, after much negotiation, persuaded the Wellington Education Board to allow them to build a school for their children (who until then rarely attended schools, as institutionalisation or staying at home all day were the only two options for disabled children) in Oriental Bay, near the bottom of Grass Street. Correspondence documents the support of Peter Fraser for their cause. But just a few weeks later, at the end of Novermber, the Labour Government lost the General Election.

Then I came across a faded carbon copy dated Dec. 8th, 1949 from Margaret Anyon, the formidable founding secretary of the IHCPA, asking Peter Fraser’s permission to name this new venture “the Janet Fraser Memorial School” because:

The work of the late Mrs. Fraser in pioneering activities pertaining to these children is known by all those who have been interested, and her sincere interest and kindly understanding of social problems needs no comment. The Committee felt that this would enable her name to be coupled with a work in which she was interested, and if the Rt, Hon, Mr, Fraser approved, the parents would feel privileged that the school should provide this tribute.

But the Janet Fraser Memorial School was never built. The residents of Oriental Bay took a petition against allowing disabled children to be educated in their neighbourhood and the new National Party Minister of Education acceded to their wishes and withdrew funding. In the last few months of his life Peter Fraser, still the local MP, helped the parents find an alternative site and the children camped for a while in inappropriate rooms in the Basin Reserve before finding a property in Coromandel Street, Newtown. Families dug out the steep section and eventually built a school, a pre school and sheltered workshop there.

Almost 70 years on, in 2017, support for disabled children is just as political. The current National Party Minister of Disability Issues has criticised IDEA Services, the service provision arm of IHC, for discontinuing programmes for which the Government provides insufficient funds to provide quality services. Hence Deborah Hill Cone’s column seeking a militant arm of the IHC.

But parents are still fighting for their disabled children, young and old. Some are planning a political response with a general election only months away. The dismissive prejudice which killed the idea of the Janet Fraser Memorial School is still out there. Quality care and services for disabled children and adults are not considered worthy of Government attention. Instead they get crumbs.

But without neatly typed files, how will history record the current stroppiness?