As you might have guessed by the length of time between blog posts, I’ve been away, first teaching a class in New Zealand, and then on holidays. In early November I taught at Alphacrucis in Auckland, and then shared my story at St Luke’s Church in Mt Maunganui (boy, would I love to live there!). I returned home for a week before travelling to the US. I’m not going to bore you with a detailed travelogue. It’s enough to say that I was roaming with a circus (Elly, Jeremy and Kate [GF], Jacob, Lachlan, and Elyssa, my carer). This was our first real holiday since the accident, we had a great time. I’m aware that disability is impoverishing for most people, and we are extremely fortunate to be able to take such a trip. Over the course of almost a month we racked up the kilometres, enjoying our first Thanksgiving in a freezing cold New York, cuddling Mickey Mouse at Disney in autumnal Florida, cruising the Caribbean, and chilling with the hipsters at Santa Monica in LA. Holidays are great to experience and boring to hear about, and I’ve probably already said enough to have you green with envy.
Since this blog is largely about my experience of living with a physical disability, there are a few things on that front worth describing.
I’m often asked about the travelling itself; about flying with a disability (Elly, listening as I ‘type’ using voice recognition software, shouted out, “you’re not bloody Superman.” Yes, well …). I’ve flown a few times locally, and it’s normally pretty straightforward. At the recommendation of other wheelies, I usually travel with Qantas, whose staff meet me at the door of the plane with a hoist, and transfer me, swinging in a sling, to my seat. It takes a little bit of organisation, and I’m first on and last off the plane, but it’s a pretty straightforward exercise. New Zealand was to be my first international flight. I booked with Qantas, but they informed me that the 737 plane they flew to Auckland couldn’t fit my chunky 160 kg wheelchair in its cargo hold, recommending instead that I travel on a Qantas ticket with their partner airline, Emirates. What I didn’t know was that Emirates don’t have a hoist, and their staff seemed to have never dealt with a person in a wheelchair. It took more than half an hour of pushing, shoving, squeezing, and bending to eventually get me seated, but rather than describe the ordeal it’s probably easier if I show you the video.
After a strongly worded letter of complaint to Qantas, I was given very good care in all my subsequent flights. Fortunately, the lengthy international flights to the USA were on a Qantas plane, and so I had access to the hoist and knowledgeable staff. In the US, Qantas partners with American Airlines, and to be honest their planes were rickety old pieces of junk. They also didn’t use a hoist, but strong and experienced staff facilitated smooth manual transfers. At least the AA planes managed to stay in the sky, and on our flight to Florida we had a brush with fame, finding ourselves seated behind Neil Patrick Harris. Barney (How I Met Your Mother) is Jacob’s hero (not sure what this says about our parenting), and he got to shake his hand.
What else can I say about my experience of disability in the US? New York was surprisingly difficult to get around. I was pretty disgusted with the subway system, since the majority of the stations have no elevators and are completely inaccessible. When you do manage to get onto a platform, the staff may or may not know how to get you onto a train. Luckily, I have my own portable ramp, which we put to good use. After a couple of days we gave up on trains altogether, and found the bus system to be much better – fully accessible and regular. Also noteworthy was that the sidewalks were in a terrible state; full of potholes, and far too often I rolled up to intersections with no ramped verge. After hitting one crack in the path especially hard, I broke my back wheel (that, luckily, I was able to get repaired in Florida). Florida and Disney, by comparison, was an accessibility dream – a city seemingly built for wheelchairs (and mobility scooters, but that’s a story for another time).
It is also a good thing I travelled with a strong and creative carer – thanks Elyssa. We had to hire hoists in each of the cities we visited, and in every case were surprised that they were operated manually – a hand pump to get me in the air. Elyssa “enjoyed” the exercise, but started to wonder whether Americans had heard of battery-powered technology. There was inevitably problems with hotel rooms, but that’s true in Australia also. Beds were too low for the hoist to fit underneath (so we travel with bed risers). In New York the toilet was too wide to fit the commode (no need to tell you how we solve that one). And there’s never enough space in hotel rooms for our equipment (my chair, hoist, commode, and baggage provided us with a daily jigsaw puzzle). This sort of thing is part and parcel of the fun of travel, and also provides a reason to look forward to returning home.
But all this sounds far too negative, and I need to restate that we had a wonderful time, even better than I expected. One anecdote might illustrate the point. Secretly, I’d not been looking forward to Disneyland. The idea of watching on as others enjoyed rides was depressing. What I hadn’t credited was the determined strength of my boys and the girls. With the aid of a handheld sling, they carried me onto countless rides. It demanded some huffing and puffing (I’m not light and dainty), and queues of people were forced to wait while I was manoeuvred into place. But my family took on the task eagerly, and it’s hard to describe the thrill of taking rides that I’d assumed would forever be inaccessible. On the final day of the trip, the last thing we did before heading to the airport was to ride the Ferris wheel at Santa Monica Pier. I wouldn’t have dreamed that that would have been possible, but my family/circus made it happen, and so I got to watch the sunset from on high.
Well it’s good to be home. Happy New Year to yo’all, and I pray you have a rich 2015.
Shirley MortaraJanuary 2, 2015 at 2:07 pm
Tauranga is where my family lives. If there were jobs for me I would never have left. I was thrilled seeing your pictures on Facebook and realising you could participate on the rides
Craig BennoJanuary 2, 2015 at 2:45 pm
Shane. Your a bloody legend brother. That left a tear or two in my eyes.
inekeculbertJanuary 2, 2015 at 4:59 pm
Lovely Blog again Shane. Delighted you had this wonderful experience with the family. A win, win, for all. Have a healthy and satisfying 2015. from Kerry and Ineke
Robert MatikitiJanuary 2, 2015 at 8:45 pm
Happy 2015 brother
Jen DangerJanuary 2, 2015 at 9:00 pm
Love your music to the airlines video! I remember when I was in New York feeling angry about its difficulty in accessibility for people with disabilities. So glad you all had such an incredible holiday despite the added challenges – your photos looked amazing and made me slightly jealous – I need to go to Disney again soon! Happy New Year!
Don HarrisonJanuary 3, 2015 at 12:32 pm
I’m amazed that in this day and age things have barely improved for us quadriplegics. It doesn’t seem to be any different from the seventies.
The first transfer then was to one of their old wheelchairs. This had to be done by one of the airport staff even though I had an experienced lifter with me. Their technique was always the same – they would fold my arms and stand behind me – and then lift from under my armpits. This technique will lift you a couple of inches if you’re lucky so the transfer is more of a drag. You would now end up with your knees up under your chin in a chair more suited to a pygmy. All of this carried out in the airport lounge where you become entertainment. (As in your video Shane). If you wanted to sit on a pressure relieving cushion, that was a serious complication. You would only do this to yourself if you enjoyed embarrassment.
Great you might think, thank goodness that’s over – but it isn’t, that’s just the start. An hour later when everyone else had boarded the plane they would transfer you to a very narrow canvas seat with lifters front and back as with a stretcher. This was to take you onto the plane so that they could manage you into your seat (again with an audience – just like in your video Shane but without the music – which I thought was brilliant by the way) I wanted to laugh but I teared up instead.
Needless to say when you get the other end you have the same ordeal in reverse.
I am astounded, shocked and disappointed to see that we are given no more consideration or respect these days. Really –, we can lock down power chairs in cars taxis and buses, why can’t we have a space in the front of the plane to lock down wheelchairs in the front row..naah! Too easy, I can hear them listing all safety issues and complications.
Sound like a hoist would have potential but before I fly again I would need to know how much of a spectacle I would be and what the advantage is. I’m really not a pretty sight suspended in a hoist either.
In 1982 Spain I fell headfirst from their canvas transfer chair onto the tarmac. Bundled me back as if nothing had happened.
In the early to mid 90s I travelled to Canberra a few times with exactly the same multiple transfer experience. So I have stopped flying. I just can’t believe that in this day and age we are still just baggage.
Perhaps we should talk to someone like Sir Richard Branston to see if something positive could be done to make our travel a bit more graceful. It may not be easy but I refuse to accept that this is how it has to be.
Good one Shane, that video must carry some weight in the argument for change.
Shane CliftonJanuary 3, 2015 at 6:11 pm
Don, so great to have you commenting on my blog. I share your frustration, although I should say that I’ve had no other experience as bad as that video. I was surprised to discover that Qantas is the only airline that uses a hoist system, which works well. Indeed, it’s not embarrassing, since I get to take my own chair to the door of the plane, and I’m boarded before any other passengers are around. Its essentially the same as getting in and out of bed at home. Perhaps you could take a trip to Australia via Qantas?
You are right though. Why is this system not universal! And yes, tying down our chairs would be best, but the hoist system is surely doable. I took nor floght on virgin, and they used manual handing. I’m sure this is not ideal for their staff. Maybe OH&S might provide incentive?
EllyJanuary 3, 2015 at 10:19 pm
Why is Kate gluten free?
Tania HarrisJanuary 5, 2015 at 12:45 pm
Great post Shane!
Don HarrisonJanuary 5, 2015 at 12:48 pm
Thanks for your response Shane, I’m pleased to hear that things have improved over the years with some airlines at least. I’m not normally so negative about things it’s just that transferring from a chair these days is quite a big deal for me and probably many other quadriplegics too. Your video brought back memories of past experiences that I hoped had been rectified by now. I feel strongly that the best resolution would be to have the option of locking down our own power chairs. I realise that this would be an additional cost – probably in the tens of thousands of dollars to the airline industry but I would like to think that just because it’s difficult and expensive it wouldn’t be dismissed as too hard. It would require a ramping system and a couple of detachable front seats with optional anchor points for wheelchairs. Safety issues could always be overcome with sufficient motivation. (J. F. K – “We choose…. to do this not because it is easy, but because it is hard…’ –. Ref. Space travel in 1962)
I believe that one day this will happen, and when it does I will be there with my boots blacked.