travelling to New York from UK

[Irving]

Any pointers, suggestions, helpful advice... for 5 night trip in October

C6A tetra/quad, unable to self transfer
Will need to take carer + electric wheelchair
Accept will likely need to be manhandled into 'aisle' chair to get on plane and ditto into seat...
Should I use Jay3 cushion on aircraft? Will I have room to do pressure relief?

Need transfer to hotel - how to arrange suitable WAV taxi?

Need hotel room with wetroom, plus provision of hoist & shower chair - how to ensure suitable?

How wheelchair friendly is NY?

Am I better to use specialist travel agency? If so, who?

Fish seem to be only supplier for travel insurance, who else is there?

What have I missed?

[Burgerman]

>>>What have I missed?

You wont know till it happens.

Do you have adequate blonde fit carers?
Do you have fixes for as many eventualities as possible? Because if it can happen it will.

I think its a very brave thing you undertake. I don't have adequate confidence in the abilities of others to try it. They have shown me time and time again that my lack of confidence in their abilities is well placed.

Keep us informed (entertained!)

[Irving]

Well I figured if Nandol can do Thailand and Brazil, NY should be doable. Not sure which carer will be 'on duty' that week but both are fit, if not blonde (anyway, redheads are more my thing )

[HiltonP]

OK, we've done Cape Town (South Africa) to New York four times. A hell of a lot further than your journey, but if you want to go and visit the place, then you need to go, regardless of the challenges!

The aisle chair it is a given, there is no escape from that, but the good news is that it's not that much of an issue provided you let them know constantly what your requirements and your limitations are. Remember that they handle hundreds of disabled people every day covering a huge range of disabilities, so they won't necessarily understand your situation completely.

With regard to the transport from the airport to NYC, and the hotel itself, you need to make those arrangements yourself. I certainly would not trust a specialist travel agency. The problem is most of the specialist travel agencies aren't very specialist!

You know what you need, and these days with e-mail, Internet, Skype, and digital photography, you should quickly be able to ascertain whether the hotel is suitable for you. Don't trust anyone else to do this for you.

You missed the "having fun" part! It's one of the world's great cities, there is a much to do. Have fun!

[HiltonP]

I would certainly recommend that you take your wheelchair cushion with you and use it in the seat on the aircraft. Simply remove the existing aircraft cushion, and replace it with your own wheelchair cushion (you don't need to ask permission to do this). I use a ROHO and it makes a huge difference to the trip in terms of controlling pressure. I don't know how the JAY operates but the change in altitude certainly affects the ROHO so I take my little hand pump with so that I can release pressure, and increase pressure, as required.

[ex-Gooserider]

New York has a mixed reputation for accessibility - Former Mayor "Nanny" Bloomberg fought tooth and nail against having accessible taxi's. SOME of the extensive subway and bus system is accessible, but not all of it... They will NOT respect your HP parking permit that is issued elsewhere, and are very anxious to tow you away....

They do have an accessible ride service, but that must be booked in advance, and I'm not sure what the rules are about out-of-town folks to get access to it.

I would strongly suggest contacting some of the major US SCI support organizations for advice, particularly NSCIA and the Reeve Foundation. There is a specialist travel agency that is connected with NSCIA that seems fairly competent, and may be able to help with resources and how-tos...

My personal feeling is that I'd rather go skinny dipping in a cesspool (without a snorkel...) than visit New York City, based on my limited previous experiences in the place, all pre-injury, and everything I've heard about it since makes me feel even more strongly.

However tastes differ....

ex-Gooserider

[HiltonP]

Here's a good start.....

http://bigapplegreeter.org/what-is-the-access-program/

[Irving]

thanks for the info so far.. I've made some progress/research elsewhere too.

I've been to NY as an AB several times. My son is running the Chicago marathon on Oct 11, having managed a sub-3:30 time in London, and its their wedding anniversary & daughter-in-law's b/day that weekend so my wife is going with to babysit & support him on the run. Then they are going to NY for a few days and the plan is that I'm going to meet them there (we've done Chicago and I can't face the crowds on marathon day) as its our wedding anniversary the following weekend.

Its certainly do-able, just need to sort the logistics out!

[Seajays]

What dose the change in pressure do to a Roho, I sat on mine but did not change anything.

[Burgerman]

In an aircraft its "cheaper" to lower the pressure. To approx. 11 to 14k feet point. So the roho will inflate by that specific pressure level.

Its internal pressure will increase by about 3psi.

What in fact happens is that you take off at approx. 14.5 Psi (air pressure at the typical airport slightly above sea level) and it is allowed to reduce by a little to approx 11 psi during the flight in the cabin. Outside air at 35k feet up, its much less still and you would turn blue. So this lower pressure is called cabin pressurisation because its above the atmospheric pressure.

The air in your cushion will therefore expand into the lower pressure cabin, and so will be over inflated. It will then go back to normal as the aircraft decends and the pilot equalises the pressure (and your ears pop) before landing.

http://en.wikipedia.org/wiki/Cabin_pressurization

[LROBBINS]

Good explanation, except for the cabin altitude inside pressurized aircraft -- none are higher than 8,000 feet equivalent, and many newer ones are quite a bit nearer sea level than that (and your ears pop less). Ciao, Lenny

[Burgerman]

Cabin pressure equal to 8,000 ft (2,400 m) (approximately 10.9 psi, or 0.75 atm)
http://en.wikipedia.org/wiki/Cabin_pressurization

From that wiki link.

You are correct regarding altitude.

But the same 3psi difference at cruise (more in fact) that I had in my brain!
That's quite a bit in one of those cushions. I am really surprised someone wouldn't notice that.

Side note!
I noticed this because I used to tune motors. And built Automotive dynamometers. And measured Horsepower. And so have used the DIN and ISO pressure and temperature (for HP correction) formulas that include altitude corrections in my previous life. And noticed that in the mountains near to you, and in Andorra that all the diesel trucks pour out black smoke, and my bikes felt really gutless! It never ceases to amaze me how every bit of knowledge and physics is related to everything in life.

[Irving]

Some feedback on my trip to New York. Well I survived; paraphrasing the song, if I can survive there I can survive anywhere!


The good stuff:

Flights on United in Economy+ were fine. Took chair to plane door, stripped it down and duct-taped everything to seat base/frame. Chair was returned undamaged at end of flight though took about 20min or so. Used my seat cushion instead of aircraft one. Cabin staff on outbound flight were a bit reluctant as aircraft seat cushion is a floatation aid. I pointed out that, given my condition, if we ditched, lack of a floatation aid was the least of my problems!

Access into most places in NYC was good and more often than not we skipped queues; the customer service was excellent. We got to see two Broadway shows and the seat locations were great unlike many UK venues, though no discounts for companions. Eating out was never a problem either. Empire State, Guggenheim, 9/11 Memorial, Landmark boat cruise, National History Museum, Grand Central Station and many other attractions were fine.

The hotel (Hilton Doubletree Suites on Times Square) location was excellent as many places were within walking distance which turned out to be essential.


The not so good stuff:

Transfers from wheelchair to aisle chair and then to seat and vice versa were stressful and uncomfortable. At no time was a sling used and airline/ground staff seemed a little unsure how to do it safely. On the return flight, arriving at LHR, they virtually dropped me, only my carer stepping in to help saved me; she was very angry.

The pre-booked private transfer from Newark to hotel through Go-Link was a complete disaster. No one there to meet us as far as we could see; transport info desk did their best to help. Go-link sent a van an hour later but despite making it clear it needed to be wheelchair accessible it had no ramp or lift. Eventually after 2hr the desk managed to secure space on a shared Blue Shuttle who bumped some passengers to another Shuttle to make room in a van with a side access lift. Cost me $42.

Transfer from Hotel to Newark was better but not perfect. I booked it locally with the Blue company who'd been so helpful on way in. Unfortunately their scheduling wasn't so great this time; they were 30min late due to traffic and the rear access lift vehicle had problems getting enough parking space to deploy the lift; eventually we managed to get in but it took nearly 45min and they had another pickup to make. To be fair to the driver he did try to cancel the second pickup but that wasn't possible. Fortunately the freeway was fairly clear so we made up some time and were only an hour later than intended. United fast tracked us through security and we made the gate in time for pre-boarding only to find there was an hours delay anyway!

When I got home I filled in the Blue Shuttle online survey and next day I got an email offering a full $65 refund so hats off to them.

While New York locations are generally accessible the quality of the pavement (sidewalk) is pretty poor and drop curbs vary from ok to downright dangerous (e.g. a steep slope into a pothole) to non-existent (most strangely at Newark drop-off and several major attractions; I needed to travel in the road for up to 100m or more to find one, or one that wasn't blocked).


The bad stuff:

The hotel was another story. As my carer and I were delayed at Newark, my wife, son and his family (who flew in from Chicago where he'd run a respectable 3:35 marathon) arrived at the hotel 3hr earlier. The rooms allocated on the 21st floor were definitely not accessible and the hotel denied all knowledge of our accessibility request. My wife was stressed out and in tears by now. Fortunately I'd forwarded the voucher info to my wife so she had it on her phone. Eventually, after my son had a not so quiet word with the manager, they 'upgraded' us to the HHonors suites on the 9th floor where there was one accessible Queen room available, the only one left in the hotel apparently. To call it accessible and an upgrade is questionable at best. They had to move the furniture, mainly the huge sofa-bed, around just to get the wheelchair in the living room which was tiny. With me in there, there was hardly any circulation space and in-room activities were a juggling act.

The bedroom was even worse; we had to have the chest of drawers moved to have only just enough space beside the bed for the hoist and the thickish carpet made moving the hoist very difficult for my carer. ADA compliance was questionable, certainly there was only just the required 36" between bed and wall but the huge wall mounted tv reduced that by some margin at shoulder height.

The bed was so soft that transfers would be impossible even if I could transfer and my carer really struggled to get the sling under me or position me in the bed. I was very concerned for her safety. Requests for a firmer mattress got the response 'they're all like that'; a board was offered (though how that would have helped isn't clear) but couldn't be found.

The bathroom was just about ok with a roll-in shower if you ignore the 20mm step up from the bedroom and the non-compliant sink which I couldn't get close to. Shower water pressure was poor and temperature variable and not thermostatically controlled: certainly not ideal for an unaccompanied disabled user.

Complaints to the staff elicited the response that there were no other accessible rooms available (an online check confirmed that, but how many were in use by disabled guests is hard to say though we saw quite a few wheelchair guests), that we had already been upgraded and been given premium WiFi access (which didn't actually work for the last 2 days of our stay due to a provider fault). We asked for late checkout on one room but that wasn't possible as they were fully booked. I'm sure if we'd had the energy we'd have fought for a refund but as it was all pre-paid on a voucher via a travel agent it wasn't going to be easy. The agent is following that up...

Wheelchair accessible taxis in NYC are a joke. You call the dispatcher only to be told there's nothing available for at least 90minutes. If you're lucky enough to see a free one on the street and you hail it they either ignore you, or (on 3 occasions) they can't take you because the ramp is broken or they've forgotten the straps or some other lame excuse. And when we did manage to get one, only 1 in 5 actually knew how, or bothered, to restrain the wheelchair with all 4 tie downs and offered me a seat belt to restrain me.

We can't use the subway as my wife is claustrophobic. We did consider using buses but most of the time the stops were blocked by parked vehicles and the bus couldn't get to the curb to deploy the access mechanism.


Conclusion:

I enjoyed much of the trip and it was great to spend time with my 3y-old granddaughter but it certainly wasn't stress-free and I'd have to say the overall experience was mixed. I'm not sure I'd do it again any time soon.

[Burgerman]

That is why I don't bother.

Even the supposed disabled friendly hotel across the road from my house isn't! To get in you have to fight, go through a restaurant that often means moving guests and tables, and then use a non compliant ramp that I built in my kitchen and had carried across and dropped in place by a carer. That was after many years of being told how it couldn't be done. They have one disabled "friendly" room. That has a shower you cant use, a doorway you cannot turn into as the corridor is too narrow, and no room either side of the bed for a wheelchair even if you sawed off the bedside cabinets... They have two disabled parking bays, normally with a shiny Mercedes or similar parked in there belonging to a guest that didn't think it mattered.

But the advertise it as disabled friendly. I would expect that the rest of the world is exactly the same.

[MenCallMeGimpy]

But the advertise it as disabled friendly. I would expect that the rest of the world is exactly the same.

I travel a lot for business and leisure, so I know the accessibility situation varies widely. After years of struggling to get around in London, I finally moved to California, chiefly for the much better accessibility options. Here, I'm able to get around in my chair very freely. Most buildings are properly accessible and even the popular beaches are well equipped with ramps and beach wheelchair loan facilities. Of course, there are older buildings in which the fitting of a lift or making accessibility modifications would be prohibitively expensive, but they are fairly few and far between. Finding wheelchair-friendly transportation is fairly easy. All buses are equipped with lifts and there is an accessible van service for those who need door-to-door service (although it's not a great solution for people in a hurry, as the waits can be long). I still drive, however, so I haven't needed to use accessible transportation much.

(Incidentally, Candy Harrington wrote a great book called "Resting Easy in The US" that lists disabled-friendly accommodation across the country. As a disabled person herself, she is very clear about the actual accessibility features of each place she reviews. The book is a bit old now, but I still find it very useful. It's available on Amazon in dead tree format or for Kindle.)

Cities like New York and Chicago are a different story, however. They were built in an era when disabled people were expected to live out their lives in hospitals and sanatoria, so little accommodation was made for them in the infrastructure. New York, for example, used to be tolerable for getting around via wheelchair-capable van services, but "ridesharing" services like Uber and Lyft have largely put these out of business. The subway is, similar to much of the London Underground, a joke. Stairs, stairs everywhere and nary a lift in sight. A few stations have been retrofitted for accessibility, but that just means you can travel between one of these and another similarly-equipped one. Not exactly convenient. And there's still the problem of getting on and off the train (at least there's no "mind the gap" nonsense and 8" chasms between the train and the platform). Hotels are also problematic. New York hotels, in particular, are basically a scam. You typically enter a luxurious lobby, check in at a sumptuous reception desk, are wafted to your floor in a richly paneled elevator, and are then deposited in a hallway that looks like a utility shaft. When you get to your room, it's the size of a gerbil cage (often with the odor of one). Retrofitting disabled facilities into these coffins was always going to be a losing game, so the efforts are typically desultory. Bathrooms are even worse, since most of the plumbing was installed when God was a lad and nobody has the appetite to upgrade it. Often, "accessible bath" means they've replaced the fixed shower head with a spray hose. You still have to climb over the edge of the bath to get in.

The rest of the US is a mixed bag. The West Coast is definitely the more disabled friendly, with Oregon and Washington offering similar levels of accessibility to California. Nevada (specifically, Las Vegas) will do anything to empty your pockets, so they make it very easy for disabled people to do so. The East Coast is varied. New York, Boston, Baltimore and further south provide greater or lesser degrees of accessibility, so you have to do your research much more carefully. Washington DC is not bad, particularly around the Smithsonian and other central tourist attractions.

In Europe, Germany is pretty good in the major cities, although the cobbled small towns can be a challenge. Paris' broad avenues make it pretty easy to wheel around and the major museums are accessible. Little hole-in-the-wall cafes and restaurants may not be so accommodating, however. Italy is pretty bad (wheelchair ramp starting halfway up a flight of stairs, anyone? ATM machine five feet in the air?). Spain gives no shits. Greece has bigger problems and, anyway, your family should be looking after you, shouldn't they?

Scandinavia is generally good, with accessible public transportation and buildings in the major cities. It gets tricky in the winter, however, with sheet ice forming on the pavements, making any journey an adventure (I still have nightmares about sliding uncontrollably down the long hill in front of the Edvard Munch museum in Oslo, face contorted like the subject of his most famous painting). Iceland is pretty good. Reykjavik is even accessible in winter, largely due to the fact they channel steam beneath the pavements, so snow and ice are less of a problem.

Australia is pretty good. Sydney's suburbs might be a bit of a challenge, but the downtown area is compact and easy to get around in a chair. The center of Melbourne is nicely accessible for the most part, but the iconic Melbourne Trams aren't (Not entirely true: there are some accessible ones that disabled people can use via special "super stops" dotted around the city). Adelaide is very pretty and nicely flat. It's compact, so getting around with a chair is pretty easy. The surrounding wine country is definitely worth a visit, but you'll need an accessible car/van for that. The major cities are quite far apart, so you'll need to drive (and drive and drive) or fly if you want to see more than one place.

In Asia, I've found it advisable to stick to the major resort hotels. They tend to have the best facilities and are part of global brands with a reputation to protect. Mom and pop places think "accessible" means "fewer than four flights of stairs." Singapore is making a big effort to improve its accessibility, with the result it's now a fairly easy place to get around in a chair. Older buildings are still an issue, but so many new ones are springing up everywhere (all of them accessible) that it's not really a problem. Japan is fine (Tokyo, Kyoto, Osaka) and terrible (everywhere else). China is a friggin' nightmare (In the major cities, often the only way to cross the road is via a pedestrian footbridge, accessed via a formidable flight or two of stairs. There's sometimes a lift, but it is always locked and the key-bearer is nowhere to be found). In the countryside: well, don't bother.

[snaker]

@Irving: I truly admire that you were able to go far thousands km and to survive for weeks in somewhere else your home. I have the same disability as yours, I deeply understand how hard it was. I want a trip abroad, just to the neighbor peaceful country Laos where is only 200-300km from my house. Untill now, I am unable to do it.

@MenCallMeGimpy: I know a place in the Earth where there is not anything "disability friendly" or "disability accessible". It's my city

[MenCallMeGimpy]

@MenCallMeGimpy: I know a place in the Earth where there is not anything "disability friendly" or "disability accessible". It's my city

Oh, I know. It's a beautiful country, but not good for disabled people. I went there for work two years ago and it was very difficult. The people were wonderful and helpful, but there wasn't much even they could do to help me get up five flights of stairs.

[Irving]

@Irving: I truly admire that you were able to go far thousands km and to survive for weeks in somewhere else your home. I have the same disability as yours, I deeply understand how hard it was. I want a trip abroad, just to the neighbor peaceful country Laos where is only 200-300km from my house. Untill now, I am unable to do it.

Hi sneaker, it was only a week and the logistics of arranging it were substantial, but that was more than enough given the hotel room. I suppose with better accommodation you could get round the transport issues and it would have been less stressful.

Battery range was a limiting factor, it turned out my charger was 200-240v only, stupidly I'd forgotten to check, just looked in the manual that came with my wheelchair which said 'worldwide' charger so I had to rent a charger there but I could only get a 3A one so by the end of the week my already knacked batteries were struggling.

I am sorry to hear about your situation. I'm sure you'll find a way one day; where there's a will there's a way!

[Burgerman]

Battery range was a limiting factor

Never ceases to amaze me how a lead brick that seems ok most of the time around your home doesent work on a busy day. Have a day out somewhere, go on a train, airshow, strange town, shopping centre like Shefields huge one, and you always run out of power... Its highly frustrating. Lithium is the solution.

[Irving]

Battery range was a limiting factor

Never ceases to amaze me how a lead brick that seems ok most of the time around your home doesent work on a busy day. Have a day out somewhere, go on a train, airshow, strange town, shopping centre like Shefields huge one, and you always run out of power... Its highly frustrating. Lithium is the solution.

Yes, well these bricks are nearly 3y old , do get outside three or four times a week and have been looked after but are on their way out.

I have negotiated for my PHB about £500 for a pair of pc1500 batteries every 2 years but plan to use that to build a 24v lithium pack which will be extended & repurposed to 48v later.

[flagman1776]

In the USA, HC parking permits go state by state. The authorities will recognize driver's licences & auto registrations for the whole US, Canada & Mexico... but the blue HC hang tag state must MATCH the vehicle's license plates. Beyond that, no one checks. This is a problem if one flies to a holiday destination & rents a car but your HC permit is not accepted there. Just Nuts!

A couple of years ago, I drove out to visit my brother in upstate NY. I stayed in an older motor inn / hotel... had once been very nice but had changed hands several times since the closing of the Air Force Base adjacent. (It showed signs of wear & tear but the mgt & staff tried hard to be nice.) I had booked a HC room on the ground floor... I did get it without complaint... it turned out to be the furthest room on the wing. I needed my TravelScoot to get to the lobby, LOL! I had brought my own shower seat. The transfer slide (had ONE for the whole facility) was not useful. I brought my own suction cup grab handles for the tub, I used one only as the metal bar they had was bulky but strong. (Days Inn and Suites, Oriskany, NY)

I chose this hotel because on a previous trip, the inn we'd booked on a previous trip had no records of the accommidations I'd reserved. What a crock! I refused a room on the second floor with no elevator access. The room we got had a water leak over the bathroom. He were moved to the room next door but by then it was morning & we just left the pass through door open so we could use the bathroom without being rained on. (Locally owned Quality Inn, Rome, NY)

[Sully]

Flagman,

You travel much the same as I do. Bring what you think you need with you. I bring a toilet lift ring, shower stool, 2 suction cup shower handles, I don't neen the transfer board, but I have a 5foot ramp foldable and a pair of 2 foot plywood ramps with threshhold aluminum brackets.

Many Motel rooms in Rural New York do not meet an kind of code, but the economic situations make them very hard to enforce. Most of the law were enforced would just close. As it is many have become temporary welfare accomodations, and that is sad testimony to what happens when a major emloyer disappears. Those closed military bases were the life blood of some communities. Eventually they mostly recover, but there are quite hard times in between. A lot of families have lived in those areas for more than half a century, and now the have to go else where.

[Rollin Positive]

So sorry to post so late and to hear about some of your challenges to NYC.

A few things it sounds like you might not have known. You can call in advance to SuperShuttle http://www.supershuttle.com/ and set up a pick up to the Manhattan cost is about $20 they keep track of your arrival so if you late or delayed they know in advance.

You can also take the subway direct to. My Wife also doesnt like small areas but she says the subway is fine not all that small. No different then riding a bus.

Next time you might just take the elevator down and see how she feels I think most people have a preconceived idea but its like a whole another city down there.

In regards to taxis New York has an amazing system called 311 with an app called Wow https://play.google.com/store/apps/details?id=com.ridecharge.android.wowtaxi&hl=en You can request a cab and on the app it will show you where there are in gps and how soon to get to you, plus cost of your trip.

You also can go to a subway ticket booth and buy a 7 day pass for $28-32 and you get unlimited Subway and bus riding with in 7 days.

We travel a lot so what we do it find a hotel with a great rate and then work with the General Manager in advance. We have them go in and take smart phone pictures of the room, doorways, bathroom etc. So we know what to expect. We also have house keeping take out extra furniture in advance that we dont need to make more room.

Hotel beds because of the use each day can get soft so we have had the mattress flipped in advance if still to soft we will sleep sideways on a king or backwards. Be surprised how it firms up when you use it different then other guest.

We have found New York City and New Yorkers to be one of the best citys and so accessible. Hope you go back for a return trip!