Category: Uncategorized

31 December 2020

When my ex-husband and I split 15 years ago, I had a lot of soul searching to do. There was no event, nothing salacious or titillating that ended us, but we were both there and there was plenty of fault to go around. We were married for seven years and to tell you the story of our relationship and its demise would take another seven years. It was weekly, daily, hourly – the little joys and the little hurts that add up to heartbreak and longing and loneliness and ‘could have’. To cut a seven year story short, my chief failing was this – I did not make a safe place for him to be himself. He tried to be himself, but I didn’t make it easy, so he stopped trying. I’m sure there was much more to it in the weekly, daily, hourly but in a nutshell, that is what I learned about me.

Since that time, I have taken it as my job to create a safe place for people to be themselves with me. This avocation of mine – creating a safe place – is not limited to my relationship with Stellar Steve, though that is the most important place that I practice it. I also take this avocation into my friendships and my work relationships. Of course, I have had to be reminded from time to time. Lessons, for me, are not only learned once; instead, they are reinforced in different circumstances in different places and times. Small interactions that make me say, ‘oh yeah, that lesson again’. I don’t mind – it’s a bit like being pruned so that I grow well.

What does it mean to make a safe place? My starting point at work is giving a person cover from the noise of ‘busy-ness’ and constant requests so that they can get on with their best work. At home my starting point is being open minded and non-judgemental – letting quirks be quirks and letting foibles be foibles. Letting go of the need to control. Letting go of the need to be the one who knows the one and only way to do everything. It is delightful how many interesting and lovely things emerge when people have the space to do things their own way in their own time. Letting yourself be surprised is one of the tricks.

Since the debacle, I’ve had more than a few interactions that have given me pause to think about this ‘safe space making’ idea. One type of interaction that has happened over and over is people opening up to me out of the blue about a challenging experience they are going through. Sometimes it is a work colleague or a friend and sometimes it is a complete stranger. A friend at work who had a few scary months of treatment for melanoma, a woman whose daughter had surgery for severe scoliosis and now has a scar on her back just like mine, a man whose close friend had an accident and is now tetraplegic, a woman whose uterus is playing up in odd and publicly embarrassing ways. Another type of interaction is one I’ve written about before – street people giving me a quiet thumbs up as I pass.

I think all of this is of a piece – there are two things going on that work together. The first is being open and the second is being vulnerable. I choose to be open to new and different. I have no choice about showing vulnerability. People see the chair and, whether it is true or not, they see suffering, imperfection, challenge, misfortune. Perceiving me as vulnerable makes others feel safe and gives them permission to open themselves to me and expose their own vulnerability. This is a gift and I accept it with gratitude. I also feel the weight of it; the weight of my responsibility to listen openly without judgement. You can see how these two things work together, one driving the other. You can also see how these things require courage on everyone’s part. It takes courage for a person to show me their imperfections and it takes courage on my part to hold the space open and listen. As one of my favourite researchers, Brené Brown says, this is the risk we must take if we want to experience connection.

One of the most interesting results of these interactions and reflections, is that instead of feeling weak and vulnerable, I come away feeling stronger and more energetic. The connection is so important to who we are. All of you who know me know that I have worked so hard these past five years to regain as much of the independence I used to enjoy as an able-bodied person. I want to be able to do things by myself, on my own, without assistance, but I have learned so much about what it means to be truly independent and how important it is to be able to see and help each other. The connections that are built when we help and are helped, when we expose ourselves and really see the other … without doubt these interactions and connections strengthen our sense of belonging and our sense that we are all in this together.

I am finishing 2020 stronger, more connected and happily vulnerable.

4 May 2020

What an interesting start to a year. I’m at home. A lot. I’m filled with gratitude that we got into our own house before New Zealand closed. I’m filled with gratitude that Steve and I can both work and be productive from home. I am filled with gratitude that I have friends and family that I can still be in contact with, albeit a little less physical and a little more virtual. I am filled with gratitude that I live in a place where our leaders in government can say things like ‘be kind to one another’ with a straight face and no one thinks it’s a joke – we are not cynical about ‘be kind’.

The past year has been about discovery for me. I’ve been learning what it means to be a disabled person, and some of the lessons have come harder than others. I’ve changed jobs to see what it is like inside an organisation that helps newly injured people and I’ve started a year-long leadership course focussed on disability and access. The new job has been great, and the leadership course has been a bit mind-blowing. There are 12 of us on the course – all with a disability of some sort – and I just can’t tell you how humbling, interesting, funny, refreshing and intelligent our discussions have been. I’m learning so much about people that it is hard to fit it all into my brain and make sense out of it.

A topic that has come up for me a couple of times over the past five years has surfaced more frequently and more obviously in the pandemic environment. This is an issue that I’ve been discussing at length with my course-mates and I want to talk about it here with you. At grocery stores, there is a queue and standard procedure is to wait in the queue, 2 metres (6 feet) apart until it’s your turn to go in and shop. Every time I go to the shop (no matter which one it is), I am invited to go straight in, no waiting. When the queue is 40 people long and looks like it might be a while … you can imagine how this feels lucky or like a no-brainer. Go on in, Claudia, you’ve been given a free pass. But you know me. Things are never this easy.

I’m not vulnerable in any way. I’m strong and fit. I can wait in a queue. I’m concerned that people see ‘disabled person’ and think ‘vulnerable person’ or ‘weak person’ or they just straight up pity me. I don’t need to go to the front of the queue. BUT, I get that there may be some in the disabled community who really do need to be let in first or need to get in and out fast. I also get that people want to be kind and I appreciate that. I wonder, though, how much of their perception of disability colours the rest of their actions and the rest of their beliefs – if you think I’m weak or vulnerable, would you hire me? If you think I’m weak or vulnerable, would you be friends with me? would you invite me to join in sport with you? if you think I’m weak or vulnerable are you silently judging my decision to come outside to the shops on my own?

Unsurprisingly, there is a term for it. It is the “subtle bigotry of low expectations”. This term was coined by an Australian guy to demonstrate that, unlike other minorities, we are rarely subject to violence, hate speech or blatant discrimination (yay). Instead, we get this insidious pity and niceness that is really hard to call out and address, because we then get accused of being ungrateful, having a chip on our shoulder, etc (booo). We (and I do mean all of us in this community) get called ‘inspirational’ because we somehow manage to get out of bed in the morning and brush our teeth without maiming ourselves. If that’s the most you expect me to accomplish, no wonder getting in and out of a swimming pool looks like a miracle. No wonder earning a living or living independently or doing the shopping – all of these everyday things suddenly appear inspiring. Well golly, if that person in a wheelchair can walk her dog, then I can go to the moon or run a marathon or paint a masterpiece.

The truth is that we are each differently endowed, and all of us – each and every one of us – does the best we can with what we have every day. We are functionally diverse and we each operate with advantages and deficits across the full range of physical and mental abilities and capacities. Should I pity you because you can’t whistle a tune? or ride a bicycle? or do subtraction without using your fingers? It so happens that I was fully functional for my first 50 years. I know what it means to look at a person with different or less function and feel pity or inspiration. It is hard to face that now, but it’s part of learning about what it means to wake up and be functionally different. Talking about this with my course-mates is refreshing in some ways – putting a name to these experiences and knowing it isn’t only me is a real comfort. The flipside though, is the cold reality of coming to terms with the way society sees us and thinking about how to change that.

I want people to keep being kind. I want people to look out for each other and give each other a break. I want to keep connecting with my community and my neighbours. I also want to be an inspiration – not because I can function like the independent, strong human I am – but because I have somehow found a way to change society in ways I never though possible.

19 January 2020

I’ll admit it. My only coherent memory from the Intensive Care Unit is a brief conversation with my dear friend, KP. I asked her to kill me. I asked if there was some way of unplugging me or doping me or something … anything. I had no idea what kind of life was ahead of me, but I imagined that it would involve heavy dependence on others for every action and every activity. I imagined that I would permanently be taking from this world far more than I would be giving and that sounded like my worst nightmare. KP, in her inimitable way, verbally slapped me (she has mastered the balance of kind and tough). She said I was being ridiculous, that it wasn’t even legal to do such a thing and for good reason, and that of course I had so much more left in me to give. She even dragged her partner, Joris, into it – “tell her, Joris, this wouldn’t even be legal in the Netherlands and they are the most liberal country in the world about these things”.

It was the perfect response. I thought “Well, okay then. This is how it’s going to be.”

That memory always makes me emotional. Always, it fills me with a mixture of shame, remorse, grief and pity. But it was real, and I accept that in that moment I could not conjure a better outcome for myself or for the people close to me. As my mate, Len, says “every barrel’s gotta have a bottom”, and that was mine.

As you all know, I went through rehab for a couple of months and spent many more of the following months learning how to be in a new form. I named my feet because they no longer felt like mine – they felt, and still feel, like they are their own separate entities. It isn’t just my feet either. Sometimes that’s how I feel about the whole 78% of my body that I don’t control.

I’ve had ambitions about what I can learn to do in this Claudia 2.0 form – I’ve written about some of them here. To be honest, I have been treating my body as a tool – much like my chair is a tool – and my approach has been to learn to use the tool. It feels inanimate, like a vehicle or a means for doing something. What it doesn’t feel like is something to which I am emotionally attached. I don’t feel good about it. I don’t get joy from seeing it or using it.

Often in a musical, there is a ‘reprise’ – a song that was sung early in the performance is repeated about two thirds of the way through. But the repeated version, the reprise, is usually changed somehow from the original. It is often livelier or more open in its sound. It might be in a different key. It is familiar enough that the audience recognises it but different enough to bring new life into it.

I am not a new year’s resolution kind of person. I think I’ve made three of them in my life so far. However, I am a reflective kind of person, and I do believe it is worthwhile to think deeply about life and about where you’re headed. In the spirit of the season, I am aiming for a reprise. Instead of more Claudia 2.0, I’m aiming for Claudia 2.1. A changed version – familiar enough to recognise me but different enough to see the new life.

My 2020 will be about falling in love with my body. I am determined to stop treating it as a vehicle and remember what it was like to feel joy in what my body can do – in what I can do. I am determined to stop treating it as a tool and remind myself what it was like to feel a little sore from exertion and strong from building muscle and endurance. I want to feel nourished by healthy food, and more than that, I want to feel like I’m doing right by myself when I eat. I want the result to be a more upbeat, lively version of me; one that is familiar but new.

It has taken some time, but I can now see what KP was talking about in the ICU – I do have more to offer; more to contribute. I’ve been practicing that contribution through my job, but I don’t feel like that’s the end of it. This year, I’ll start with taking better care of my new self and learning how to love the imperfect – who knows where that will lead.

1 December 2019

You may have heard it yourself – that big sigh of relief coming from the direction of New Zealand. Steve and I moved into our newly renovated little house in Miramar, and neither of us can seem to stop smiling.

It’s been 4.5 years since the debacle and 3.5 years since we bought the house. It feels like a lot has happened in the intervening years, yet at the same time, it feels like our lives have been on hold. Both of use have said sentences that start with, ‘when we get into our new house …’ because we have felt like this house would solve so many of our day to day issues. We have put parts of our lives on hold (risky, especially at our age) and we have put faith in an object to make life better (risky at any age). You can judge for yourself whether this has paid off. I already know the answer.

Below is a short list of things I have done unaided in the past few days that I could not do in the past 4.5 years without some level of assistance:

• Took Friday (the dog) for a walk around the block (together with Steve but without his help – he was there purely in an ornamental capacity … that and good conversation)
• Rolled down the street to the local takeaway to get some egg fried rice and brought it home for dinner
• Cooked burgers on the stovetop – seeing into the bottom of the frypan – and served them onto plates
• Washed three loads of laundry, including loading the washing machine, pegging out 80% of it and putting the other 20% in the dryer

This is a list of things I did unaided and hassle-free in our new house that I also did in the past 4.5 years but with some level of assistance or hassle:

• Turn lights on and off – imagine if, for the last 4 years, you lived in a house where all the the light switches were set at least a foot above the top of your head. A few of you might like it, but many of you would find it a stretch. Every. Time. Then imagine moving to a house where all the light switches were at or slightly below elbow level. Just reach out and flick. Ahhhhhh ….
• Open and close the blinds (or window coverings of any kind) – imagine if, for the last 4 years, you lived in a house where the curtains or blinds were on the other side of a three-foot moat and the moat was filled with aligators (okay, that’s an exaggeration, but it might as well be true if you physically can’t reach something). Maybe you could sssstrrreeeetch to grab a piece of one curtain and sort of fling it to a position that blocked a third of the light, but that was the best you could hope for on a good day. Then imagine moving to a house where the blinds have a remote control and you don’t even have to leave the bed to open or close them or you could do it from any part of the room. Ahhhhhh …
• Enter and exit the shower – imagine if, for the last 4 years, you lived in a house where the shower stall was on a platform at your shoulder level with no steps or stairs so you had to do a chin up+ to hoik yourself into it and do something equally ‘fun’ to get out of it. And no cheating by taking a shower at work or at a friend’s place – all showers in the world are the same as yours or worse. How often would you just skip the shower? Then imagine moving into a house where you take your clothes off in a big room and just turn the water on. You don’t even have to step over a threshold. Ahhhhhhh …

And finally, this is one thing I did this week with what I will call an introductory amount of assistance. Meaning, I think I will need less as time and practice happen.

Getting in and out of a swimming pool or spa – imagine if, for the last 4 years, the only pools and beaches you used were not just public, but public plus you have to perform 28 pushups on the side of the pool with everyone watching before you’re allowed to sit in a chair and roll down a ramp into the pool while everyone else gets to just walk down the steps ‘like a normal person’. Then imagine moving into a house where you can change into your bathers, roll out to your private deck and sit in a chair that lifts you quietly into the pool. Ahhhhh….

The last thing I want you to imagine is not something I did this week, but something I did without. Imagine that every time you needed assistance with one of the tasks above, it was the person you love most in the world right there beside you to help in any way you needed it. I know that it isn’t a ‘hassle’ to help someone you love, but you can’t tell me that it isn’t sometimes inconvenient, frustrating, time consuming, exhausting. Imagine that you are aware of this level of worry that you are to another person, but you are unable to make it stop – you are physically incapable of doing these things unassisted because it’s the way the world is designed and you can’t rebuild it yourself. Imagine if someone redesigned one little corner of the world for you and suddenly your beloved person could be free to think about his own thoughts or do his own life stuff without worrying about you. Ahhhhh …

14 July 2019

So many hiccups, so much time … The home renovations continue, but I wanted to share a few pics so you know there is progress. The latest hitch was the garage (honestly, don’t get me started), but the house itself is very near completion.

I’ll try to keep updating as we go. We don’t have a definite move in date yet, but we are hoping for September. I’m optimistic (still). We don’t want to move in until the garage and driveway are complete, but we may move some furniture in over the coming weeks to get things out of storage and to experiment with placement. The progress has lifted our spirits a bit and being able to imagine living there helps too.

I don’t think many of the people involved in the decisions have a good understanding of what the waiting does to a person’s life and the lives of their family members. I also don’t think many of the people involved in the decisions have a good understanding of what this level of independence means to a person’s life and the lives of their family members. I’m hatching plans to invite people around to show them why this is important and talk to them about the difference between living in an unmodified house and a modified one. I honestly believe the voice of lived experience has an impact on some people, and I only need to change the perspectives of a couple of people to make a real difference in how the system works. Wish me luck.

28 April 2019

It will come as no surprise to anyone that I have recently become keenly interested in what it means to be a disabled person. Being a disabled person is only part of understanding what it means – another part of the understanding comes through knowing how others perceive disability and how that perception is expressed in society. There are rules about the care of disabled people, rules about accessibility, rules about who is in and who is out, rules about who pays, and rules about treatment. I don’t know most of the rules. I don’t know the individuals who provide the advice to the other people I don’t know, the lawmakers themselves. I don’t know where or how they obtain their knowledge. And finally, I don’t know, but I suspect that the majority of the people in each category are well-meaning and able bodied.

In itself, that bit about being well-meaning and able bodied isn’t a problem, but it does beg the question – how would it be different if the people making the rules or advising on what the rules should be were living with impairment?

I have been thinking about this for a while – wondering what difference it would make to take the insights of a disabled person into the creation of policies concerning disabled people. I have also been considering what difference it would make if that disabled person was me. Can I make a difference? Can I bring my policy experience and my insight together to have an impact? More than that, is it my duty to try?

I’ve been practicing the dark art of policy making for nearly 20 years, almost exclusively on the topic of nature. The natural world is something I care deeply about, and I honestly believe we’ve made a hash of it over the past 100 years or so. I don’t think I’m being particularly hard on myself when I say I’m not sure I’ve made a difference to the way people use or protect or interact with nature. Not sure I’ve made the world better; not sure I can lay claim to any actual improvements. That’s kind of how it is with policy work – the evidence of actual change is elusive. That doesn’t stop me wanting to try, and it doesn’t stop me answering with a very hopeful ‘yes’ to the questions in the paragraph above.

In a couple of weeks, I’m taking up a new position at ACC – the Accident Compensation Corporation, the New Zealand Crown entity covering all people affected by accidents in New Zealand. That’s right, the very group that picked up the tab for my medical care post-accident, that provided all my equipment to support my ongoing mobility needs, that continue to argue with me about housing modifications. That ACC. I’ll be working across three groups – strategy, policy and research. So much to learn. So much to discover.

My aspiration is to make a difference for people affected by impairment in New Zealand. I have no idea what shape that will take, but I’m excited about the possibility.

15 December 2018

Two years, 2 months and twenty-two days after we bought our house, we received our consent from council to renovate. Mind you, the council consent only took about 3 of those months, the rest was process. Assessing, drawing, rejecting, arguing, re-drawing, agreeing, changing, etc etc. This is how it works when the national accident insurer is involved. We still have months before it will be complete and ready for us to move in, and to be honest, we are dragging ourselves toward the finish. Both of us are tired and just want it to be over.

I don’t know whether you remember what the original house look(ed) like (see post from August 2016 … even typing that makes me annoyed. seriously? two and a half years ago?) but it is a small 1950’s built bungalow on a rear section (also called a battle-axe block). The light blue house on the left in the picture is our neighbour and our new fence leaves us a little bit of room to plant something nice along the drive. Also, the driveway will be one long bit of concrete, not split like it is currently. The paved bits we have now are only just wide enough for my wheels, which is fine if I’m sober, it’s broad daylight and I’m paying attention. Realistically, I won’t always have all three of those things on my side. 

The northeast corner of the house will include the kitchen and laundry. There is new double glazing and some pretty sweet appliances yet to be installed. There will be decking and ramps for my access at this end of the house.

Where Steve stood to take the picture, there will be a storage shed for sports gear (Steve’s bike and my hand cycle, for example).  There will also be a garage of some description in that area.

Below is a picture inside from the dining room through to the lounge and front door. Part way along on the left hand side, you can see a little folded down shelf, which is the fold down door of our drinks cabinet – so ’50’s, so cute. The other good thing that you may be able to see here is the floor – they’ve pulled up all the carpet and the floorboards underneath are nice enough to polish. Hooray! easy rolling flat surfaces with no carpet!

I won’t spoil you with the other 60 ‘during’ pictures I got carried away with. I just wanted to share a bit of progress and let you know it has finally started in earnest. The builder’s contract says they will finish at the end of March, but I’m hopeful we will be in by Easter (end of April). The house warming party will be visible from space.

1 August 2018

Hawaii and I have a history. Six or so years ago, when I was living in Canberra, my sister and I toyed with the idea of meeting in Hawaii. As it happens, Honolulu is almost exactly halfway between Canberra, Australia and Camilla, Georgia. We could meet, celebrate my sister’s birthday and have a lovely tropical vacation. Instead, Steve and I decided to move to Wellington, so the trip to Hawaii was postponed.

Two years later, we decided it was time. For several weeks, I researched, planned, schemed, questioned and made bookings. It would be a little bit Waikiki and a little bit low key. Just me and my sis getting around, seeing new things, drinking mai tai’s and enjoying each others company. Instead, I had a tumble off my bike and my visit with my sister took place in the Auckland Spinal Unit.

I can honestly say there are few things more heartbreaking than ringing a snorkel tour guide in Hawaii to say you’re not coming. I can also honestly say that one of the few things more heartbreaking than ringing that guide is the cold, hard realisation that it is unlikely to ever happen. This was not a postponement, it was a cancellation. In the mind of Claudia 2.0 three years ago, there was no way I would be able to fly that far, enjoy the beach, push myself around a city, and get off the beaten path in a way that would be not only do-able but enjoyable.

I was wrong.

It took a little bit more planning, a bit of diligence in choosing accommodation, more support from my loving partner, and slightly modified expectations. But we did it. We did it. We did it. What follows is how and who and where.

First step: get there. I am not up to traveling alone on a long haul flight (maybe one day – I’ve stopped ruling things out), so the trip included Stellar Steve. If one must make allowance for change, including someone like Steve instead of traveling alone is actually a bonus, not a concession. We flew with Air New Zealand and they know how to take care of their passengers. I contacted their support crew ahead of time to let them know I use a wheelchair for mobility, I answered their questions about wheelchair type and size, and they could not have been more ready for me. Check in was a breeze. Getting into an aisle chair was a breeze. They had my personal chair ready for me in Auckland so we could get to the international terminal without assistance. They had the aisle chair ready for me for the next flight and they kept the aisle chair on board so I could get to the toilet mid-flight. Nothing was a problem for the air crew or the ground crew – they took absolutely everything in their stride. When we arrived in Honolulu, my chair was out of the hold and ready for me within minutes.

On the ground in Honolulu, an airport staff member – also named Steve – took charge of me and two other wheelchair passengers to guide us the back way through the airport avoiding escalators and airport renovations to get us to passport control. We went in the short line with air crew. We were treated to speedy service right through the airport and baggage claim, and our ground transportation (SpeediShuttle) was waiting for us.

Second step: stay there. Claudia 1.0 booked accommodation at small hotels and probably would have gone the AirBnB route – Claudia 1.0 was past staying in hostels, but was a bit more adventurous in accommodation choices. Claudia 2.0 is a little nervous about what is meant by ‘accessible’ in accommodation advertising, so I booked the Hilton, which I felt sure would comply with Americans with Disabilities Act (ADA) requirements. The Hilton Hawaiian Village Waikiki was lovely. The room was spacious, the bathroom had a roll in shower as well as a bath with shower over, the hand basin was roll under, three of the pools had hoists that were easy to use, and the whole village was accessible with ramps and flat, wide doorways.  The room had a small but accessible balcony overlooking the resort and the ocean. We had a couple of our meals in hotel restaurants and both the service and the food were excellent.

Not surprisingly, the village is fully self-contained. One could have a complete holiday in the village without ever leaving its borders. In addition to pools, bars, and restaurants, there are clothing and souvenir shops, ice cream parlours, and a big luau in the evenings.

Thank you, Hilton, but staying in one spot and not seeing the sights really isn’t for me. My only complaint – minor – is the distance to Waikiki beach and other ‘off campus’ sights. I am pretty sure I pushed more during those four days than I had pushed in the previous 2 months combined. I didn’t have to – there are accessible buses and trolleys ($2 will get you anywhere in Honolulu) – but I did. For me, the pushing and getting around is part of the fun. The main areas of Honolulu are beautifully accessible with well-paved paths, and easy curb and gutter crossings. The main beach at Waikiki has a blue mat for rolling out to the sea.

Third step: on second thought, keep moving. Rather than staying in Honolulu for the entire trip, we hopped over to ‘the big island’ of Hawaii to get a taste of something different. Hawaiian Airlines had inexpensive fares between islands, and their service was excellent. Like Air New Zealand, I rang them ahead of time to let them know what I needed, and they provided it. I traveled with a shower chair as well as a bag containing spare wheels with fat tyres and a “freewheel” for off-roading, and none of this was charged as ‘excess baggage’. Aisle chairs were at the ready, and my chair was available within minutes of arrival at our destination.

Fourth step: unpack and make yourself at home. We flew into Hilo, a smallish town on the east coast of the island of Hawaii. It is low key, has a few good cafes and restaurants, and it is home to two botanical gardens and a couple of State Parks. There are a couple of hotels here, but we decided to stay a little outside of Hilo at Mahana House Country Inn. The rooms are very spacious and kitted out with a small kitchenette, king sized bed with sleep number mattress, spacious ensuite bathrooms (mine had a roll in shower with no steps or edges), and a lovely lanai (open verandah) with views to the ocean. There is also a very spacious common area with a full kitchen, so if you’re like me and you have a sister who makes the best southern fried chicken inside or outside of Georgia … what? you don’t have one of those?

Hosts Randy and Alison are the kind of people who are there if you need them, but completely out of view if you don’t. They are ready with suggestions for cafes, places to visit, and things to do. The property is a working tropical fruit farm, and bananas, avocados, lychees and longans are free for the taking whenever they’re in season. I ate their entire 2018 profit margin in bananas.

While there, we visited the botanical gardens – a living seed bank for plants from the tropical areas of the world – and Mauna Kea observatory.

At Mauna Kea  we stayed on in the evening at the information centre and looked through telescopes trained on specific points of interest in the night sky. If you get the chance to go, be sure to pack your thermals, it is high and cold.

Step five: get yourself out and about. After Mahana House, we drove north to Hawi for a taste of remote Hawaii. This area of the big island is covered in points of interest related to Hawaii’s history. King Kamehameha was born here, there are Heiau (temples) and other cultural sites, and of course, lush tropical vegetation. The plan was to stay at Kohala Village Inn and Hub – I booked months in advance and even spoke to them on the phone to make sure the accommodation would be wheelchair accessible. Unfortunately, it was not. The Hub includes a cafe and lots of open space for yoga, music, dance classes, and other cultural practices and learning. I was really looking forward to it. Although the Hub is wheelchair friendly, the accommodation is not. My chair wouldn’t fit through the bathroom doorway in any of the rooms and the shower was not accessible even if I’d managed to get into the bathroom. The staff were apologetic, but that’s not particularly helpful when you’re there and in need of a room.

So it was back to yet another Hilton, this time further south on the Kailua-Kona coast. Again, lovely rooms, accessible property, accessible pools, but not what I would call an ‘authentic Hawaii experience’. We stayed two nights and managed to book a snorkel outing with Body Glove.

What an amazing little adventure their cruise was! It was easy to get onto the boat, there was a light breakfast available on arrival, the staff were young and energetic and capable, and no request was too big. There are accessible toilets on board, and they provide all of the equipment you need to have fun in the water. Ola lifted me (with the aid of Steve) down the stairs and into the water. As he said, this was not his first Luau, and he inspired confidence in the way he helped me and made sure I was comfortable. They had a floating ‘lily pad’ attached to the boat so a person could easily just hold onto that and float face down to see fish and coral. Using a couple of pool noodles and Steve’s hand, I could paddle out and around to see what I wanted to see. At least three of the staff members are watching at all times to make sure people in the water are safe and enjoying themselves.

Lunch is served on board and there is a full bar for those who might want a refreshing mai tai after a paddle in the sea. I cannot say enough good things about this outfit.

Our final night on the Big Island was at Luana Inn – again, something of a guest house a little inland from Kona but with ocean views. I had to do a bit of adapting to take a shower and the pool was not accessible, but we were only there one night. With a bit more thought and planning, it could be a much more accessible place, and I will be encouraging them to make a few small changes that would be a big difference.

Step six: make sure to get in those last minute sites. Back in Honolulu, we took a tour to Pearl Harbour with Enoa, did a little bit of last minute shopping, ate some lovely local food, and snorkeled Hanauma Bay.  Pearl Harbour is completely accessible, including the boats out to the Arizona memorial. When we were there, the Arizona memorial itself was closed for maintenance, but the boat still ran us out there and turned and stalled and turned some more so that everyone on board had the opportunity for a good view. Hanauma Bay is also accessible with snorkel gear for rent AND free beach chairs to borrow so you can get into the water. There is a trolley providing a ride down to the bay itself (able bodied people pay $2.50 for the return trip, people with disabilities ride free) and both park service staff and volunteers are there to make sure you have fun.

Our final days and nights in Honolulu were spent at the Waikiki Parc. This is a lovely hotel, well located, with a focus on accessibility. The basic room we had (no ocean view, not huge) was ample with nice accessible touches. Large bathroom with roll in shower, a basin I could roll under, a push button auto-opening door to the room, ramps over the door sill to the balcony and a lovely rooftop pool with hoist. The hotel is just over a half-mile push to the main Waikiki Beach and there are about half a million shops, cafes, bars and restaurants in between. I can recommend the Mai Tai Bar at The Royal Hawaiian for a cocktail and a view of the sea. Even the roll through the grand lobby is worth a few minutes.

Step seven: Finally, the trip home and a moment to reflect. I’ll admit to a touch of sadness on arrival in Hawaii. This was not the trip I planned four years ago. This was not going to be Claudia 1.0 hopping in and out of the surf with ease, helping and encouraging my sister to snorkel for the first time, driving to Mauna Kea and hiking to the top, going for a trail run to a remote waterfall. There I sat, overlooking that famous beach, grieving the past, present and future and wanting something different to what I have. One thing I’m pretty poor at doing is hanging on to the downside. Cry? sure. Keep crying? not so much. Get it out and get on with it.

I had a wonderful holiday. I was enabled by my sister and my partner to do and see some amazing places. I was able by myself to get around and catch up with friends I hadn’t seen in years. I felt warm trade winds. I swam over coral alongside beautiful tropical fish. I ate beautiful meals of fresh seafood and southern fried chicken. I drank refreshing cocktails with little paper umbrellas. I learned about old Hawaii and saw with my own eyes their ancient places. I laughed along with everyone else at the Samoans in their Village at the Polynesian Cultural Centre. I relaxed.

Some things about it were hard. I had to plan more, adapt more, and try more. I had to ask for help sometimes and push myself hard sometimes. But this is aloha – this is what we love, how we love and why we love.

 

 

 

 

 

 

7 April 2018

After a catastrophe, the insurance company gets involved. In my case, because I am a resident of New Zealand, the country’s national insurer came into the picture. The Accident Compensation Corporation (ACC) people do their best to assess the situation and help the injured get back into life covering everything from medical care through to the equipment and therapies that support independence. It is the ‘assess’ part that is on my mind of late.

Several months into Claudia 2.0, the ACC sent me to a specialist physician who assessed the nature of my impairment. His job was to describe the physical impairment as well as its likely duration. What he discovered and described was not news to me. I am paraplegic and the impairment is permanent. The degree to which I am permanently impaired, according to his assessment, is 78%. Let that sink in. That leaves 22% of me unimpaired.

Like any good insurer, the ACC uses this information to make decisions about the support I need, the length of time I will need it, the chances of me getting back into the workforce and staying there, whether I need vocational assistance (i.e. to learn a new occupation), and the level of compensation I am entitled to for the injury. They have formulas, of course. They have calculated values and assigned figures to everything.

Because of my head injury, I suffer from fatigue. Like most people, when I think of fatigue, I think of feeling tired or sleepy or even a little sore. Brain fatigue, I have learned, is quite different. I don’t feel anything physical, but I do sometimes feel overwhelmed, or brain-tired or cranky. These are signals that I need to rest my brain – give it a break from stimulation of any kind for just a little while. For this reason, I have not returned to work full time – four days is quite enough.

The insurer covers that one day – meaning my employer pays me for five days and ACC reimburses them for one of those days. Like any good insurer, ACC sent me to another specialist physician, this time to assess whether I am likely to ever return to full time work. It is his job to describe my condition and its likely duration. What he discovered and described was completely in line with what we discussed during the appointment and was true to what I feel, but one line of his report stood out to me and continues to throb in my head, “Looking at her total productivity and overall work hours, she is most likely operating at around 70-75% of her pre-injury capacity”.

Reading that, all I could think was that on my best day, I am 3/4 of what I was.

It will not surprise you to know that I have been thinking about this a lot.

First of all, fuck the 75%. I won’t let it be who I am.

Second, what can I do to make sure I’m getting all I can from what works? Which leads me to a bit of discussion that goes on in my new tribe about the use of the terms ‘disability’ or ‘disable’ or ‘handicap’ or ‘special’ or whatever else gets put in front of or behind the word ‘person’. And yes, it isn’t just about the word but about placement – does it go before ‘person’ or after ‘person’? Mostly, I find these discussions tedious. Treat me like a human. Don’t be a jerk. We’ll get on fine. But recently I came across something that made me think twice. Some people prefer “person with a disability” because it puts the fact that we are people first. Others prefer “disabled person” and the reason really stuck with me – although I was impaired by an accident, I am disabled by the world around me.

I am unable to enter buildings if there are stairs and no ramp, I am unable to use a toilet if there isn’t enough space to turn around, I am unable to reach the counter if it is too high, I am unable to board the bus if it doesn’t drop to the curb, I am unable to shop in some stores if the aisles are too narrow. When the world is designed with all levels and types of impairment in mind, all people are enabled to do all of the things I’ve listed. I am disabled by poor planning, lack of foresight, assumptions about my capability, prejudice, ignorance, and thoughtless design.

All of this came together in my head to remind me of a speech made in 1863 by a freed slave called Sojourner Truth. In her speech ‘Ain’t I a woman?’ she says

If my cup won’t hold but a pint, and yours holds a quart, wouldn’t you be mean not to let me have my little half measure full?

I never understood this so clearly as I do now. If I can only rely on 22% of my body and 75% of my capacity and you can rely on 100% of both, wouldn’t you be mean not to let me have, do and be all I can? Allowing me to be all I can takes nothing from you or from anyone else.

To be clear, I do not blame anyone but me for my impairment. I am not suggesting for a moment that if the world were better designed, I would be made whole. I acknowledge that I have work to do to get the most I can out of all I have. My plea is that the rest of the world doesn’t hinder me in that pursuit.

 

2 January 2018

The start of a calendar year is as good a time as any to reflect, and having a break from work certainly helps. My mind has time to wander, and I find myself looking backward and forward in equal measure. 2017 was a big year for me and my family – the bipedal and the quadrupedal and the quadruwheeled – the ups and downs drawing us ever closer to one another.

I aimed for 2017 to be my year of independence. The car is modified and I can drive. My wheeling skills have definitely improved, and I’m increasingly able to get out on my own with no assistance from anyone else. We are still in a rental house, so the accommodation is not as … accommodating as it could be, but I (and we) are working out better ways all the time for me to cook, reach, transfer and do other things alone that I enjoy and that I want to do for myself.

More than that, I learned (or was reminded of) some life lessons:

• Defining a vision of what is possible for yourself is critical – not having this for a period of time was nearly the end of me;
• Sharing that vision with a person who can see it as clearly as I can makes it more likely to achieve, makes the path to it more interesting and greatly enhances the picture;
• Being able to breathe while floating is a pretty important part of swimming;
• People will see me the way they see me – the only thing I can control is my response;
• Sometimes just asking for what you want or need actually works;
• The professionals have a lot to add, but there is no substitute for trial and error in finding your own way;
• Hanging out with people who share your same circumstance is a great comfort, even if you never mention your circumstance – my friend refers to it as “common peril”, and it forms part of the glue that holds us together and makes us feel safe;
• Experimenting with different ways of being is a valid way of rediscovering who you are;
• Being in the company of friends you’ve had for a long time can remind you of what you can’t do anymore, but the warm love far outweighs the grief;
• Dogs have the power to lift spirits, comfort the wounded, make the boss laugh, open doors when your hands are full, alert everyone to the presence of toddlers, push the crosswalk button, and fetch the remote;
• Cats have the power to lie beside you while you drink tea in bed and somehow make you believe that’s enough of a job to cover room and board;
• Going to the gym is a drag; being at the gym is loud and annoying and stupid; having gone to the gym makes me feel virtuous and strong – sometimes having done something is better than doing it.

I’m sure there’s more, but now it’s your turn. What did you learn (or re-learn) in 2017?