Riddle me this …

I’m sorry to be the bearer of bad news, but air travel is going to be another can of worms.

First, you’re supposed to call the airline in advance and tell them what accommodations you’ll need. (Assistance getting to gate, aisle chair to get on to plane, board first, equipment you need to bring in the cabin, etc.) If you’re lucky they might actually write this down and be ready for you. More likely you’ll get there and no one will have a fucking clue what to do.

Make sure you pack any medical stuff in a separate bag. This is both for your benefit and the airline’s: yours, because they can’t charge you extra for taking it even if you have too many bags, and theirs, because it’s thoughtful to put all the things Homeland Security might try to confiscate in one easy to search place. You might wish to carry a doctor’s note for anything especially scary-looking, like syringes or liquids.

Please note you’d better arrive early to let the airline employees get over their panic attacks. Don’t count on having any extra time for things like last-minute bathroom trips though; they may have a “handicapped bathroom” stall, but it won’t have facilities for changing/catheterizing a female person with a disability. If you’re so unlucky as to be a woman with a disability who wants to fly somewhere, you’d probably better dehydrate yourself, because you won’t get to use a bathroom until you arrive at your destination.

Any medical equipment that can be checked will get special little red dots stuck to the outside of the suitcase. This is the secret symbol to let the baggage handlers know they’re supposed to drop it off the conveyer belt.

Next you’ll have to surrender your wheelchair at the gate, and transfer Pearlsky to what is euphemistically called an “aisle chair”. (It is so called because it just barely fits down the aisle of an airplane.) It bears little resemblance to an actual wheelchair, having tiny wheels and very little in the way of support or padding. Pearlsky will be strapped in like Hannibal Lector and hauled on to the plane by a poorly trained airline employee. Make sure they don’t tip the chair over, barrell into a wall, or run over/let her limbs get caught in things.

(You will probably have to remind them repeatedly to let you pre-board. More likely you will remind them and they will still forget, or you will be made late by the TSA’s attempt to confiscate your life support equipment. Everyone will stare at you as you are hauled onto the plane.)

Pearlsky’s real wheelchair will be hauled away by another poorly trained airline employee. Make sure you remove everything delicate you can possibly remove from the chair; cushions, head rest, etc.; else they will probably get broken or lost in transit. Yes, you get to carry them all with you in the cabin for free! Yay! (Have an extra bag or three handy.)

(Theoretically, if your wheelchair can fold they’re supposed to allow you to bring it on board and stow it in the closet. I have never met anyone with a small enough wheelchair for that.)

Now comes the fun part. You have to transfer Pearlsky from the aisle chair into a regular airplane seat, with absolutely no room to manoeuvre. You are not allowed to sit in the exit row where there’s room to transfer in and out, because exit rows are only for able-bodied people. Make sure you don’t screw up and injure Pearlsky or yourself in the process. You may be offered assistance, but they don’t know what they’re doing. Let them carry the bags, if there’s nothing delicate in them.

You may be able to sit her on the seat cushions from her chair, if they’re removeable. But forget about letting her sit in a chair that fits and is suited to her needs, because there are no tie-downs and never will be. (Supposedly this is because wheelchairs don’t meet FAA standards of in-flight safety, but in this age of modern space-age materials I seriously doubt that it’s impossible to engineer wheelchairs as safe as airline seats. No, I think it’s more likely the reason is that it would cost too much to give up enough space to make things wheelchair friendly.)

Supposedly they’re supposed to keep an aisle chair in the closet at your request, to help with getting to the bathroom, but you can forget that too because there’s no way you could get herself, yourself, and the aisle chair in that little bathroom at the same time.

If the plane is late in getting to its destination, the pilot just might make an announcement blaming the delays on “the handicapped passenger”. Everyone will give you the stink eye as they exit.

If you arrive at your destination in one piece, you will then be hauled off the airplane in the same miserable aisle chair. If you’re lucky, you will be met by someone dragging your now-broken wheelchair to your gate. If you’re not lucky, you’ll be given some excuse as to why they couldn’t bring your wheelchair directly to you, and you’ll have to haul Pearlsky down to the baggage claim to get your broken wheelchair. (Or sometimes they’ll send your wheelchair to the wrong country.) Inspect the wheelchair thoroughly and go file a claim. If they’re feeling generous, they might give you a $25 voucher for your trouble, to be used on your next flight. It is fairly well understood that they will have to pay for the wheelchair damages, but if you have any esoteric equipment damaged (like a ventilator), they will claim it isn’t covered. Then you will have to sue them.

I strongly suggest having an appointment with a wheelchair repair place after your flight, so there will be no unnecessary delays in getting things fixed. You can always cancel if there’s a miracle and the wheelchair emerges unscathed.

If I sound annoyed, it’s because ALL THESE THINGS HAVE HAPPENED TO ME. And this is just the beginning of my airline rant, I actually have several more gripes about the way they handle disabled passengers… but I’ll spare you them, as they aren’t relevant to your situation.

At the moment, as Disabled NYC and Claire correctly identify, it’s mostly awful. But change, she is a-coming. Slowly. There’s bugger-all information out there but, for instance: Air New Zealand has hoists. The travel chair is getting more widespread. Virgin Atlantic have them, alongside some other possibly useful options. London Heathrow airport has a Changing Places-spec toilet, which are gaining popularity fast in the UK.

Like your girls I’m hoisted, and can’t sit in anything other than my wheelchair (am waiting to see if I can get funding for a Symmetrikit armchair – fingers crossed!). I need to be able to lie flat to have my toileting needs attended to. I’m PEG fed, and keeping me safe and well provides the equivalent of 4 fulltime jobs (doing my bit to combat unemployment…)

And I really, really, really want to get back to New Zealand in this life. We went as a family when I was a teenager and still just about mobile with crutches and orthotics – it was magical. Have been seriously considering sea travel – pros: lots of space, bring what you need with you, no rush and best of all no airports – and cons being cost and major slowness. What do you guys think?

Becca

I’m not a radiologist but I think that spine needs some attention.

As for traveling with Pearlsky (I hope I am pronouncing it correctly, a hint, it’s not the eastern european version that ends in “i” that I tried the first time I read your blog):
The best advice is going to come from those that are experiencing it first hand, such as Disabled NYC.
As for airline policy, it varies with each carrier; the security rules vary from airport to airport despite them supposedly being a nationally administered service and they can be totally incomprehensible
.
And I agree, from what I have seen, it is awfully difficult to travel with or as a person requiring a wheelchair or any special assistance in this way.
Personally, I haven’t dreamt of taking K. (fully mobile) any where by plane due to her inability to sit still and her anxiety since we took her to Disneyland nearly ten years ago. But often wished we could.

You didn’t say how long a journey you are planning, I would consider the train as a possible form of transport if it is not clear across the country and hey even the LA to NY train ride might be a great experience if time is not a factor.
Leave a comment on my blog next time your by.
AJ

Google “dreammom” and her blog has the same query followed by suggestions from readers. Her son is severely disabled and was scheduled (and now rescheduled) for a Make A Wish trip to Disney World. Her blog is one that you may find quite useful.