Well, we are ready to roll.
Next stop New York City. I'll be presenting at a conference there and meeting up with friends for 'food and fellowship'. I'm looking forward to it a lot. We've adapted fairly well to the life of sometimes here, sometimes there. The wheelchair and my disability has added to the complications of travel but after three or four years it's just something else you plan for.
We know already from having been to NYC AD (after disability) that my movements will be quite restricted. We found the curb cuts to be a bare hint of, or a nod to, accessibility. 'See, we thought about it.' Too, the massive crowds make it difficult to simply get around or make turns. But that's probably just me, I would imagine that NYC disabled folk just get on with it.
What's fun is simply being there, even if being there is different now than it was before. As I grew into disability I had to come to terms with some real changes. Those changes physically are sometimes, I admit, stark. When we used to go to NY we had our favourite haunts, our favourite routines, our little rituals that are private and personal and made for 'just us'. Well, now not one of the old haunts is wheelchair accessible. It's not possible to attempt the routines and rituals. They were gone instantaneously. Gone as rapidly as the change from standing to sitting.
My first trip back to NYC after becoming disabled was awful. I went outside of the hotel and tried to negotiate the throngs of people. I got frightened. The very first curb I came to was simply impossible to navigate. I sat there with people swirling around me looking across the street to my destination - and I was alone on an island. I had moved to the land of disability. I was isolated from every single person who flowed by me. The world felt and sounded hollow. We went back to the hotel room and I only left it to go to work and after work I came straight back. I urged Joe to go out for a beer and have some fun. He didn't. It was horrible.
As we drove back home we had probably the most serious discussion we had ever had about my disability. I knew Joe loved NYC and our time there, our time 'Dave BD'. I knew he had had a distressing and depressing trip. We talked about what this meant. What we realized was that it meant the end of one era and the beginning of another. We'd have to be right creative if we were going to learn new rituals. And we have. I don't sit in the hotel room all the time, I find what's available to me and use it to the maximum. That means that my world is both smaller and larger at the same time. I could explain that but I think that anyone acquainted with the world of disability will get exactly what I mean.
So we're going down to NYC, staying at a new hotel, don't know what's there. Don't know if the curb cut will let me cross the street or if I'll have to find my own space, my own rituals on the side of the street that's mine.
NYC - the city that never sleeps is about to welcome the guys who go to bed at 8!!
Wait, you're in MY CITY! DAVE! I want to meet you!!! I was actually navigating with a stroller around the city the other day and I thought "Dave would have a lot to say about this..." the curb cuts are AWFUL. I feel like I'm taking the baby on a roller coaster every time we go out.
ReplyDeleteMy surgeon was in nyc, so I was down there all the time in the wheelchair. This time of year, when the weather is just turning to beautiful, was always my favorite.
ReplyDeleteAs a bonus, it was a lot easier to find a restaurant I could get into because so many of them had outside seating, thus avoiding the issue of stairs and doorways.
Now I'm a bit worried.
ReplyDeleteI'm coming to NYC in June and the powerchair that I rely on is coming with me.
I've never taken it away before (manual chair) and was really looking forward to being more independent on holiday but several things I've read recently have me thinking that perhaps NYC was not a good choice for a break.
Someone tell me otherwise.
Please!
I have never had to adjust to a new "before disability / after disability" life in as dramatic a way as you have. Most of the disabilities I have now are disabilities I have had since birth (not all were diagnosed until adulthood but were there all along). One progressive, adulthood onset disability has not actually become disabling yet. And the one disability that I did acquire in a fairly abrupt way is relatively mild (the tendons in my right foot are messed up, giving me some difficulty coming down stairs, making it impossible to run, and no longer as safe as it was to carry too much weight too far or too fast). So I have needed to adapt my routines but have not had to give any up.
ReplyDeleteBut I do get what you mean. As a deaf person, most movies in most movie theaters are not accessible to me. (For the few that are, in the US, check www.fomdi.com for any zip code or major city name you choose and compare to the selection available to hearing people in the same city). This does frustrate me enormously in that there are sometimes movies I really want badly to see that I just cannot. Either they aren't available at all with captions, or only at times that just don't fit my schedule. But I've adapted my routine to use resources like fomdi.com to find the few movies that are available to me that would otherwise be much more difficult to locate. And I've found other sources of entertainment. For example, research shows that deaf people tend to invest more heavily in home entertainment equipment such as TVs, DVDs, etc. In the days when VCRs were not yet very common (when DVDs existed not at all), deaf people bought VCR equipment and video tapes at a much higher rate compared to hearing people. This is all probably to compensate for the inability to see the movies we want in the theater, so we have to wait to see them on video (which are usually more likely to have captions). I know I'm inclined to consider a larger screen TV any time we're ready to buy a new one in part because there are so many movies that I will just never be able to see on a large screen movie theater, so this is my next best thing.
Also, when I became a vegan some years ago, I quickly discovered that many of the restaurants I used to go to just didn't have anything vegan. Or if they did, it was a boring selection. Some specific products I bought at the grocery store also wasn't vegan. But then I explored other restaurants that I hadn't bothered to look at before and found a new selection of favorites. I tried new dishes I hadn't bothered with before and found new favorites. For a long time I had to give up making coffee cake from Bisquick mix because at the time I became vegan, Bisquick mix was not vegan. This meant my family had to explore other recipes for our annual Christmas morning breakfast treat, and found some that we liked. (Recently Bisquik changed their ingredients and is now vegan, so for the last one or two Christmases we did have that again.)
When you have to close off a whole set of old routines, in some ways it is indeed limiting in that you can't do the old things you wanted to do. And it may be that the routines and options now closed off to you may vastly outnumber the few options that are left (often the case in a world not designed for the needs of people with disabilities). But stopping old routines does force you to seek out new experiences that you might not have attempted otherwise -- and that means you might find some pleasures you might have missed out on by sticking to the old and familiar.
I find things in NYC vary a lot (it's where I'm currently living). It's better than a lot of cities I've been to, but definitely some of the curb cuts are horrid. There are some areas of town (Greenwich Village, SoHo) that a much worse than others for things like curb cuts.
ReplyDeleteAs far as crowds go, I've found that varies too. I'm generally okay in the areas I'm in (I live in Harlem and work in Chelsea), however, I do mostly avoid midtown and the areas where there are loads of tourists. I know Times Square is stop-and-go even if you're on foot, for example.
On the other hand, the buses are all accessible and most of the drivers I deal with are friendly. I just started using the bits of the subways that are accessible with my powerchair and have been pleasantly surprised with how well that's gone.
A lot of it is in the planning. I showed up at a pub that I wasn't sure was accessible a few weeks ago and it looked like it was a "no way". Turned out they had a portable ramp so was actually a "no problem". If I'd rung a head of time, I'd probably have avoided my 5 minutes of panic.
Fun accessible things: Chelsea market (shops and food), The High Line (park on the area where the freight trains used to run in the meatpacking district), most museums, etc.
I'm a bit fan of being out once the restaurants start to put out their outdoor seating. Not only does it make many more accessible, but I like sitting on the street and being able to people watch.
May I ask where you're speaking? I'm a long time reader and I'd love to come see it and meet you!
Hey, I'm speaking at the YAI conference ... check out their website for conference information. I think it's YAI.org
ReplyDeleteI've only spent one weekend in New York, and I was coming from Utah at the time, so my perspective was probably skewed... but I thoroughly enjoyed my trip! I'd always been told how rude and self-centered New Yorkers were. But when I was running around the city in POURING rain (the outskirts of Hurricane Ernesto), and sometimes had trouble getting up one of those curb cuts, I was impressed at how quickly a random stranger would stop to offer assistance. A little push and a smile, and I was on my way. It really made me feel better about humanity to see so much friendliness in the heart of NYC!
ReplyDeleteI wasn't there long enough to try to figure out the subway system, but I loved how accessible (and FREE!) the bus system was. I'd never been anywhere so easy to get around before.