Category Archives: Disability

My Brain and Me

If I was not in my wheelchair when I was a very young child, I would sometimes launch myself off whatever I was sitting on and end up in a heap on the ground. I used to think if I concentrated hard enough I might be able to stand up. I guess I didn’t really understand why I couldn’t walk and I did think that I might just be slower than the other kids to pick it up. That was well before I went to primary school. I did understand quite well though what spina bifida meant. I would even explain to anyone who would ask, “What’s wrong with you?” that spina bifida meant I had a break in my spine because it didn’t develop properly before I was born and that my spinal cord was ‘broken’ at the same place and that’s why I couldn’t walk.

Any understanding of hydrocephalus came much later. My best guess is that the brain and its functionality is a much more complex thing to explain to a child, so it was deemed too difficult for me to understand. I also think my parents were learning in real time how hydrocephalus would shape my day to day life. I learned from very young to cover and compensate for the effects of hydrocephalus in ways that probably weren’t very evident or obvious to others at the time.

I don’t think I really understood what it meant to have hydrocephalus until I was in my mid-teens and had access to the internet. That’s when I began to do my own research. Hydrocephalus occurs in the majority of people who have myelomenigocele, which is the most severe form of spina bifida, and is what I was born with. Basically, hydrocephalus is excess cerebrospinal fluid that will not drain from around the brain unless it gets help from a valve attached to a long tube that drains fluid, often into the stomach. This is called a shunt. I had one placed when I was a baby and not only did it save from further damage to cognitive function (I was extremely lucky to have a shunt placed very early) but it also saved my life. Untreated, hydrocephalus can be fatal and, in my case, certainly would have been.

When I was around age 11, a teacher aide started joining my classes at school. I had no idea who this woman was. I knew what a teacher aide was. I’d had them before, but never in class. She was introduced to me but her role did not become clear until later, and then I had to figure it out for myself. She was there to help with anything I might need assistance with. I think it must have been established that I was doing fine in class by myself, so later I started having regular sessions on my own with my teacher aide, which mainly focused on getting me ahead in my core lessons in case I had to spend a lot of time away from school through surgery or other medical interruptions. People with spina bifida and hydrocephalus are often not very good at maths, so that is a subject we concentrated on. We tend to be a lot better at things like reading, creative writing and spelling, so I never had any help with those classes. I do remember I had to do odd things like, when the class was outside for sport or P.E., I stayed inside where my teacher aide taught me how to knit. Not only did I not understand why I was being taught something I really hated and saw no point in, I didn’t even understand that there was something different about my brain that such an activity might benefit.

Hydrocephalus can affect cognitive function in all sorts of fascinating ways. I’ve learnt to view my brain not as deformed or dysfunctional but as different and interesting. That said, there are certain things that are frustrating. It turns out the reason I was being taught, spectacularly unsuccessfully, to knit is because people with hydrocephalus often have trouble with coordination, particularly fine motor skills. This means we can find it difficult to perform more intricate tasks with our hands. My writing is not great because I don’t have the ability to control finer movements in my hands very well. It’s not as bad as it might be, perhaps because so much time was spent trying to improve dexterity and coordination when I was younger. It can be frustrating still when I’m handwriting a letter, which I tend not to do now, and I would have dearly loved to be able to draw a lot better than I can. Still, I think most people have something they would like to be good at but just aren’t and never will be.

Memory and concentration, in particular short term and visual memory, can be affected by hydrocephalus. Organisational skills can also be a challenge to acquire. I can sometimes find it difficult to follow a train of thought in a conversation because I lose track of what has been said. If I concentrate and don’t have any distractions, I don’t think it’s very noticeable. More annoying is the inability to do things like cross busy roads that don’t have a pedestrian crossing without help. I find it difficult to judge how far away cars are and how fast they are travelling, so I often try to wait until the road is clear, which just isn’t going to happen on a busy road.

I have to be taught a few times when I go to someone’s house where the bathroom is because I’m not able to keep a ‘visual map’ of my environment in my head. That was probably one of the most frustrating and embarrassing things about going to university. Not only could I not get around Wellington on my own for a long time without getting lost, I couldn’t even find my lecture and tutorial classes again, having already been to those rooms before.

Disability Support Services had small foldable maps of the university, which were not only helpful in marking access points like lifts and ramps, etc. but they also served as a discreet reminder of how to get to my classes. I was lucky a good friend was enrolled in most of my classes in my first semester, so that cut back on any embarrassment I might’ve felt at getting lost all the time. I do eventually remember how to get around my physical environment. It just takes my brain longer to store that information than it does for most others.

Something I only learned when I went to university is that I have a very good audial memory so lectures were a brilliant way for me to learn and retain information. I never really had to take notes for lectures or tutorials and I didn’t really have to study very much for tests or exams. My organisational memory is terrible, so I would have to be meticulous about writing down when an exam was and where it was and sometimes even make sure I had directions to the exam room. Then I would have to make certain I’d know where to access this information at a later date. It helps if I keep everything like that in one place – thank goodness now for cellphones! If I did forget I had a test or exam, as long as it was at the regular lecture time and place, I could be quite confident I’d still get a good mark even if I hadn’t studied. It never ceases to amaze me how weird my brain is.

I think it can help if people know some of the ways that hydrocephalus affects me so that they might modify their behaviour or at least have some understanding as to what my specific needs might be. It’s difficult to know sometimes, even for me, what is caused by hydrocephalus and what is just a facet of my personality, and I’m reluctant to overstate the impact hydrocephalus has on my life because I don’t want people to treat me differently than they might if they didn’t know I had it. Over many years of learning to adapt, I’ve been able to minimise the impact of hydrocephalus on my day to day life. On the other hand, people don’t know I have hydrocephalus unless I tell them and they won’t understand how certain things are a challenge or that I process information differently. Most often what is needed more than anything else is patience, both from myself and others.

Advertisements

Changing Shape

From the moment my leg left my body, it became medical waste. It’s not even that anymore, I’m sure. It’s… What is it? My leg existed in space and time as part of me and what I understood myself to be and it is no longer there. Amputation has made me think about who I really am. It has been at once a challenging and life affirming experience. The amputation of my leg continues to affect my identity and how I think about myself.

I am an amputee now. There’s a word for it and everything. I have resisted joining any kind of support group, organisation, or society whose members are amputees and define themselves as such. I’ve never been much of a joiner and I’ve never been one for consolation. I’m sure these aspects of my personality make my life harder than it needs to be. I believe life should be hard. That is both a blessing and a curse. I never say, or even dare think, that life isn’t fair. Nobody ever promised it would be.

After my surgery, I felt something I wasn’t prepared for; I was immediately self-conscious. In the beginning, this was debilitating. I didn’t want to see many people post-op when I was in hospital. There were only a select few who I allowed into my room to begin with. I had a room to myself. When I got out of hospital, I found it hard to muster up the courage to go out anywhere. I stayed at my dad’s place for a few weeks and the idea of going home was entirely daunting because I knew I would have to go out and be seen by people and they would see that I only have one leg. I was perplexed as to why I should care. After all, how people see me had never bothered me before.

That I would feel weird and self-conscious about my stump is, even to me, absurd. People have always stared at me. They have always noticed my wheelchair. They have always said really stupid stuff, both well-meaning and out of cruelty. I was so used to that kind of attention, I had unconsciously trained myself to block out the vast majority of it. When I joined the world again after my surgery, for a long while I could not get past the idea that everyone was staring at me. So many people stare at me when I’m out and about and I notice them now because I’m looking for it. I realised after a while though, that I probably wasn’t getting much more attention than I’ve always had, it was just that I felt uncomfortable with my new identity as an amputee and I was projecting that onto the people around me who had always looked.

Before my amputation, I was scared all the time. I couldn’t do anything much because I didn’t have the energy for it or I was too sick or I was waiting to get sick and I was scared. I’m still trying to get used to the idea I might not have to be hooked up to life saving drugs in the near future, that I might not be a patient again for a while. The thing that I thought was going to kill me is gone. I am no longer chronically ill. That sentence, that thought, has just this second dawned on me. It’s all taking a lot to process. There’s so much involved. The good and the bad consequences of my amputation do not occur to me all at once and I still can’t answer simply when people ask me if I’m glad I did it.

I’m struggling to know what to do with my time now. I got used to being a patient quickly; mind you, I’d had a lot of experience in that area already. I’m still an occasional patient but it’s really not impacting on my life in a significant way. I’ve realised only recently how small my life is. Actually, I think I’ve been aware of the walls closing in for a long while but it matters more now because I have time on my hands that used to be taken up with being a patient and with being scared.

I think I can probably be more than a patient who has disabilities and chronic illness now. I’m tentatively testing the boundaries of what I’m capable of again. I used to do that a lot. It was how I lived my life. I achieved things I didn’t imagine I’d be capable of because I was happy to accept that life is hard and that if there’s a wall I had to find a way over or around it. The thought that I might be able to get back up over that wall again after so long is at once terrifying and exhilarating.


Standing Out

Following a transfer from Wellington to Hawkes Bay Hospital, I moved back from city to town nearly six years ago now. Though I grew up here, it was a real culture shock. I still don’t feel I fit this place at all. I never knew what it felt like to fit in until I left home, so I guess it’s no big surprise to me I feel the same now I’m back.

I spent my weekend in Wellington. Despite feeling I was home from the moment my parents dropped me off at my hostel for my first year of university, I have a complicated relationship with the place now. Visiting Wellington in the years since I’ve been away, I always felt like I was coming home. My heart broke when I left. I was completely head over heels for all of it and I didn’t know how I was going to carry on outside of the capital’s boundaries. I felt my identity was tied inextricably with the place and I fitted in. Now though, I’ve got kind of used to standing out in a smaller town and I’ve begun to value myself as a person outside of the norm. I’m very comfortable with who I am this time around. I think Wellington helped me a great deal in that regard.  I finally felt I was going home when I got on the plane bound for Napier at the end of my short holiday.

I stand out not only because of my wheelchair but also because I tend to style myself in an androgynous way. I say style, I mean jeans and t-shirt with the addition, on a cold day, of a sweatshirt or jersey. There are plenty of women who dress similarly but I also wear my hair very short and don’t wear jewellery or makeup. I look like a certain kind of lesbian, which is fine and good because I am a certain kind of lesbian. I’m a lesbian who likes to be comfortable. I tell you, guy’s clothes are a revelation. They are so much more comfortable and, regardless of what the label says, you can wash them however you damn well please and everything will be fine.*

In all seriousness, I don’t feel I have much of a choice in standing out. I’ve tried wearing more feminine clothing, I’ve tried wearing make-up, I’ve tried wearing jewellery. I don’t feel like me when I’m wearing all of that stuff. I feel like I’m playing dress up. I’m pretty sure if I tried wearing a dress or skirt now, I would feel as if I were wearing drag. I like being a woman but I also like expressing my masculine side. Actually, it’s not about ‘like’. It’s a choice between being comfortable in my own skin or not.

It goes without saying, I can do precisely nothing about standing out because of my disability. Most of the time that doesn’t bother me, though I would say I have an easier time accepting my sexuality than my disability and a lot of that is down to how I choose to present myself and how much choice I have in the matter.

My disability and my sexuality and my gender are all amplified to the extreme now I’m no longer living in Wellington. I could be a bit anonymous in the city, though if I wanted to stand out, I could. I spent a while in my 20s wearing sort of post-punk garb; leather jacket, facial piercings and spiky hair that was alternately, purple and black, blue, green, and bright copper. I loved how I looked. I’ve always been a bit vain, despite my obvious physical disabilities.  Conversely, if I felt like it, I could blend into the crowd. ‘The crowd’ in cities tends to be so diverse now, it doesn’t matter if you look different because there are a whole lot of other people who look different as well and when all these different people are thrown together, nobody stands out too much.  Unless you are really trying to and there’s plenty of scope for that.

Growing up outside of a city, it’s very easy to feel your differences are exclusive to you, that you are the only one. It can be a very lonely feeling. I feel it still, now I’m back to where I started.  That feeling of isolation is tempered though with the knowledge there are others out there like me and no matter how different I am to those around me, if I speak long enough and listen intently enough to anyone, we might just find common ground.  The discovery that we’re not as different as we might have imagined is a powerful inroad to understanding and acceptance of oneself and others.

The biggest surprise for me following my weekend away is that while I enjoyed the trip, I really looked forward to coming home. One of the best things about moving back to my home town has been, though I feel and look different to most of the people around me, I’ve learnt to enjoy that difference. Standing out is a valuable gift that I might not have recognised if I’d stayed where I was.

*I take no responsibility for the outcome if you follow this advice. You should never blindly follow the advice of a blogger.


Beyond the Loop

It is nearing three months since I had my right leg amputated below the knee. I should have kept a journal. I want to remind myself on days when I’m not feeling great and I’m complaining of hay fever or mild asthma or aching joints – the symptoms of which are irritating and put me in a bad mood but are, on the whole, tolerable – that at my worst I was a pathetic, sobbing mess who regretted, absolutely, signing the consent forms for surgery. The details are already fading thanks largely to the complex cocktail of drugs I was on to control pain and to trick my body into feeling everything was fine.

There is no point in trying to explain what I’ve been through. Suffice it to say, it continues to be a most surreal experience. It doesn’t really suffice though, does it? It’s like writing a story, then refusing to continue beyond the first paragraph. Why would you bother? Trauma narratives tend not to focus on the actual trauma; or if they do, there is a strange, disconnected quality to the narrative. Have you noticed that? I don’t believe it’s an avoidance tactic. Rather, I think it’s a problem with the limitations of narrative itself.

Human beings are wonderful storytellers. We have been for millennia. We tell stories to fill in the blanks, to share our point of view, to remember and to make sense of ourselves and others. When something happens that doesn’t fit any familiar narrative – a traumatic experience – it exists on its own. There is before and after and there is ‘the event’. Trauma doesn’t fit the narrative. It cannot be easily explained or described in any way that would make sense to an outsider or even to ourselves. It’s difficult for our own brains to process trauma, which is I think why it all ends up a bit of a jumbled mess; no beginning or end, no rhyme or reason.

Trauma, in my experience, exists on a loop outside of ‘real life’ rather than as a linear progression. You only have to look at World Wars I & II to know that, even on a global scale and with the benefit of generations of hindsight, trauma – whether collective or individual – makes no sense and can never be properly processed in any meaningful way. You have to get past trying to understand it and move on, or risk being caught yourself in that trauma loop.

I’ve had about the same period of time pass now where I’ve felt comfortable and am getting about quite well, as when I felt utterly hopeless and helpless and desperate to have my leg and my life back. I knew, really, that I would reach this point. Even when I could think of nothing else except that I had made a terrible mistake, I knew that I had made the right decision. What’s that word that means the psychological conflict that comes from holding two opposing ideas in your head at the same time? Ah, yes: cognitive dissonance. That’s right. Thanks Google. The point at which I subconsciously knew that I was getting better was when I began to complain about minor irritants and ailments again. Bloody hay fever. It’s giving me such a bad headache tonight. Terrible.


You Can Call Me Brave Now

People say I’m brave when they see me in my wheelchair. That can be frustrating. I’m not brave just because I happen to have a disability. There are, however, instances in my life where I have had to find a great deal of courage from somewhere to get me through. This year I have made the most difficult decision I’ve ever had to face and, as a result, surgery for the amputation of my right leg is scheduled very shortly. You can call me brave now.

The idea that many have that it takes bravery and courage just to live in my body says a lot about how people still consider disability. Living with a disability is almost certainly many times less awful than people might imagine. If people were honest with themselves, I suspect that disability is scary to them because they don’t know how they would cope if it happened to them, and it so easily could.

I must now concede though, having thought about it, I may have brushed the label off too insistently and with too little thought as to what it really means to be brave. Certainly, I think it would be foolish of me not to accept that it has taken a lot of courage to get to where I am and that, for the foreseeable future, I will be required to be very brave indeed to get through the amputation. It is the most scared I’ve ever been. A person can be terrified and brave. That much I have learnt.

Electing to have my leg amputated on the back of 10 years of chronic wounds and infections has been a terrifying thing. It started out as a confusing thing for quite a while too as I tried to figure out what the ‘right answer’ was. If a decision is very difficult because you are trying to choose the right answer, it might just mean there isn’t one, so you have to go with what makes the most sense with the information you have. In that case, anything a person decides to do or not, is an act of bravery in the face of uncertainty.

My choices essentially came down to a decision between non-action or reaction. To do nothing would mean I would continue to suffer, I choose that word advisedly, from infections. Eventually, one of those infections would probably ‘get the better of me’, shall we say. Seems like an easy decision, when I put it that way.

The thing is though, when you’ve lived under certain conditions for long enough, even if the circumstances are far from ideal, there is comfort in certainty. Living, as I am, with the ever increasing risk of infection and the potential for sepsis looming large, chronic illness has become a new normal for me. I hesitate to say, I’ve become comfortable with my circumstances to an extent. While my expectations for quality of life have become limited by circumstance, I largely know what to expect if I do nothing. While the decision to do nothing is a more comfortable position, so long as I don’t think about it too much, it is also a decision void of hope and with a limited future.

I have made the decision to have my right leg amputated. I am choosing to live in hope. I don’t know how things are going to turn out for me. I really don’t know what to expect but I am hopeful. I’m starting to think of a better future. I haven’t done that in 10 years. Yes, you can call me brave now.


Talking Trauma

A problem with trauma is it’s difficult to find a way in. It is hard to talk about it in any meaningful way. In my experience, medical trauma and its effects aren’t discussed. Most people don’t want to talk about it. Trauma is isolating and lonely. I have to do something; reach out to someone.

Trauma is a rebellion against the limitations of rational thought. It is an absurd response to an event or events that are so terrible, they cannot be meaningfully or rationally processed. A traumatising event is a break in the narrative. That’s how trauma feels to me.

I’ve found it extraordinarily difficult to get my thoughts straight in the face of having been re-traumatised. When you can’t make sense of anything, it can be difficult to watch those around you going about their lives, business as usual. I don’t know how long it’s going to last, this ‘episode’, this break in the narrative, this trauma. I hope not too long. I’m feeling so sorry for myself and I’m unreasonably angry at myself for this indulgence.

Over three weeks ago, I had two wisdom teeth extracted. I now have a dry socket infection, which is making being awake, let alone doing anything much, frankly, bloody awful. I’ve barely left my house in three weeks. I’ve hardly spoken to anybody. I hate myself when I’m sick and I do punish myself for that with extreme isolation.

In the days before my oral surgery, I did my utmost to keep it from going ahead. I spoke to a nurse, an anaesthetist and, on the day of surgery, my oral surgeon, about how I really didn’t understand why the procedure was necessary. Before that I had obsessively researched wisdom tooth extraction trying to find a reasonable, scientific explanation that I could use to build a case as to why I didn’t need my teeth removed. At my request, I was assured that the oral surgeon would come and talk to me ‘on the day’ to assess whether I really needed to have it done.

I was in a hospital gown lying on a well starched bed, staring at the clock on the wall, when the oral surgeon came in to see me. A literal interpretation of laid back was all I could manage at the time, as I sunk into pillows lined with plastic and covered in more white, starched linen. The surgeon said, judging by my X-rays, that removing my remaining wisdom teeth was a good idea to avoid problems in the future. I relented. This was happening.

As I was wheeled into the operating theatre, I held it together remarkably well for somebody who was experiencing flashbacks to previous medical traumas. I did cry as the anaesthetist prodded my hands and arms in search of a vein, on terrain that is decidedly hostile to needles, but not because I knew it would hurt. Most needles don’t really hurt.

The human body is amazing. A symptom of my medical trauma is that my veins now disappear whenever they know a needle is going to be anywhere near them. When a vein is finally found that appears viable and the needle inserted, my veins have become adept at collapsing on contact.

I cried until I was no longer aware of my surroundings. I batted my tears away with my free arm until I passed out. Seeing the cannula, smelling the sterilising alcohol, staring up at lights that look like the underside of an alien spaceship, all of these sensory cues trigger memories of so much worse. You don’t need to know about that. I don’t need to write about it. Not today.

I was out for dinner with family last weekend following a four-hour filmed opera, which I went to on my own as there were no takers for what some apparently consider a novel form of torture. Eating is still uncomfortable but I can no longer look at soup or pudding without a reflex nausea and I had to get out of the house. Sitting at the restaurant I was tired and distracted by the infection in my mouth and how terrible it was making me feel and how awful I felt that I had chosen to inflict myself on others.

I stared at my menu. It had a clear typeface and was well formatted. I couldn’t read it. I could tell that it was written in English but that’s as far as I could get. None of the words meant anything to me and I was overwhelmed. I chose two dishes that I had eaten previously. I had enjoyed them but, more than anything, they were familiar. I didn’t know how to say that I couldn’t read the menu. It didn’t make any sense to me, so I couldn’t begin to explain it to them. Trauma is like that. That’s why it’s so hard to talk about.


Transport Matters

This morning I read about a terrible situation that several people with disabilities find themselves in, all of whom drive heavily modified Skoda Yetis:  http://www.stuff.co.nz/motoring/news/9843463/Disabled-drivers-fume-over-loss-of-transport  Due to potential safety issues, 8 warrants of fitness were revoked in December by the New Zealand Transport Agency (NZTA), after the cars were deemed to be noncompliant and therefore, not roadworthy. The Skoda Yetis were each bought for $85, 000NZ, so every individual car and modification process has been a huge investment for owners and/or funding agencies.

These car owners are in virtually the same position as lawbreakers who have had their licenses suspended. Their independence has been stripped from them and they are completely reliant on others to transport them from place to place. The only difference is the modified Skoda Yeti owners have been given a one off subsidy of $5000 for transport costs until the matter has been resolved. It feels to me like these car owners are being treated like this is their fault. Of course it isn’t; the cars were certified roadworthy before the purchase of their vehicles and now, after purchase, this status has been revoked. This is just not good enough. If this was happening to able-bodied people, there would be a public outcry.

Has anybody from the parties involved in this sorry mess, apart from the car owners themselves, ever tried to take public transport in a manual or electric wheelchair?

As I have outlined in a previous blogpost (Living Is Not A Luxury: https://chellehope.wordpress.com/2013/11/28/living-is-not-a-luxury/), bus transport can be extremely difficult for certain people with disabilities and there are a number of factors outside of a passenger’s control that might potentially make travel by bus a real nightmare, including: steep ramps that only work well on certain curb sites; lack of turning ability inside the bus and allocated spaces that can be awkward to get into and out of; busy buses that just don’t have the room to carry a person in a wheelchair; the discomfort on those same busy buses for people with disabilities and, perhaps the most affecting issue, driver attitude and willingness to work with the passenger who has a disability to ensure they have a comfortable, hassle-free journey. This is by no means an extensive list and it will of course vary from person to person. If any number of these issues factor into a person’s journey by bus, it can make the whole experience really quite traumatic.

There can be difficulties, too, in travelling by taxi, for a person with a disability. For those who cannot transfer on their own into a car, or who find it too difficult, a TMV may be their only option. A Total Mobility Vehicle (TMV) is a van with a wheelchair lift and space to carry the wheelchair user without having to transfer out of their wheelchair. TMV transportation can be great but again the passenger is reliant on a good and competent driver who knows what they are doing. Often, depending on where you live and the company you use, this option comes with a large flag-fall surcharge which, if you are not going far, can actually cost a lot more than your journey. In my experience some drivers/companies do not meter their TMV fares either, so the passenger has to accept a previously agreed charge or a seemingly arbitrary fare at the end of the journey. It’s not fair but if this is your only available mode of transportation, you have to accept these terms.

Not everybody who has a physical disability needs to use a TMV if they are taking a taxi. If, like myself, you are able to transfer relatively easily into a car on your own, you may be able to take a taxicab. Again, there can be difficulties here too, and again these difficulties can be exacerbated by drivers who make it very clear that you are a problem for them. There is nothing to stop drivers from starting the meter when you get into their cab. I’ve had some who have started the meter as soon as they stop. Though my wheelchair is easy to fold up and take apart, many drivers have struggled over the years with it. It can take a long time to get it into the boot or back seat and if the meter is running the entire time, again you can end up paying more for this waiting time than you might have for the entire journey.

The article that brought this issue of the noncompliance of modified Skoda Yetis to my attention highlighted the experience of one driver who states that he’s never had a problem with his modified vehicle and that the safety of the car has never been of concern to him. One can believe a vehicle to be as safe as they like but the onus is on the various transport agencies that we have to deem every vehicle roadworthy. That is as it should be. Road users rely on those assessments to keep us safe and to minimise harm, so I do understand that while the New Zealand Transport Association (NZTA) is sympathetic to the plight of these car owners, they have a responsibility, both ethically and legally, to ensure the safety of vehicles. What cannot be allowed to happen though is for vehicles to be certified roadworthy and then for that certification to, in effect, be made null and void after purchase when a warrant of fitness is revoked due to noncompliance issues in the manufacturing process. This is not the point at which these vehicles should have been deemed potentially unsafe and not roadworthy.

First, there’s the issue that some of these drivers have been driving their vehicles for many months on New Zealand roads. Now, if these vehicles have been assessed after purchase as noncompliant due to a manufacturing issue, the owners of the vehicles have themselves, as well as their family and friends and other road users been at undue risk the entire time that vehicle has been on the road. If, on the other hand, these vehicles are and always have been perfectly safe but have nonetheless been deemed not to be compliant to NZTA standards, it rather makes a farce of the entire compliance/safety issue, doesn’t it? Either way, the owners of these cars, all of whom have physical disabilities that make it much more than a bit of an inconvenience to seek alternative modes of transportation while this whole mess is being sorted out, deserve an apology and compensation at the very least. Though nothing is going to reverse the lack of independence, not to mention the stress caused by uncertainty that these people are still going through.

I’m not going to go into who I think is responsible or who I think should resolve this issue. That’s for others to decide. It doesn’t matter to me and I would guess it doesn’t matter one bit to any of these car owners either. They just want to be able to drive their cars to work, to the shops, to drop their kids off at school, to the movies…  A one off payment for transportation costs doesn’t begin to cover what these people have been through. That’s what matters. A good and swift resolution to this problem would have been good. This should never have happened but it has and it needs to be resolved: Now.