Saturday, September 17, 2016

Camping with a Wheelchair

As a self-righteous twenty year old, I spoke indignantly about the harmful environmental impact of jet skis, the stupidity of cats being given anti-depressants, my annoyance with RVs, and the people who camped with big tents and lots of paraphernalia.  But, the truth is that I have always loved riding jet skis, my cat will probably soon be on Prozac, I would love to have an outfitted RV for future travels, and I now enjoy car camping with a huge tent and enough stuff to warrant a car top carrier.  You grow up.  And you do what you have to do.

I spent my first six summers at a wilderness camp in Northern Minnesota, where canoes, tents, and campfires became a part of my growing self.  I then spent many a weekend in a tent with my family, car-camping in the woods of Northern Wisconsin.  As an adult, I spent a lot of time backpacking on the West Coast and abroad, camping in the backcountry, trying to thwart thieving bears, jumping in ice-cold lakes, eating rice and beans, and trying to stay warm or cool enough.  

When I lost the use of my legs, I thought I had also lost the wilderness in my life.  With a concentrated effort of creativity and flexibility, along with a good dose of humility, I found my way back into camping again.  After years of experimentation and adaptation, I finally found a set-up that works for me.  Backpacking might no longer be possible (although I still haven’t given up on the idea of wheelchair backpacking), but camping near a car was definitely feasible.  Yes, I was returning to car-camping! 

At first we stuck to developed campgrounds in state or national parks.  These generally offer at least one accessible campsite next to an accessible restroom.   Ideally that campsite has a flat site with a flat tent space and a picnic table with part of the bench cut away to make space for a wheelchair.  The restroom offers flat entry, at least one larger stall with bars, and sometimes a larger shower with a seat.  Of course, at times there are illogical details that ruin the accessibility, such as a tent platform that is raised several inches above the campsite ground.  Or the road between the accessible campsite and the accessible restroom is itself not accessible.    In such cases, the unconventional problem-solving skills of MacGyver (including the stand-by supply of plywood and duct tape) are required. 

We soon graduated to camping in less-developed and even unmaintained areas, bringing its own set of challenges.  Creativity and flexibility became even more important, as we had to search for a site that I could get to and around, paying attention to access and obstacles, as well as to ground surface and incline.  Creativity also comes into play when cooking and eating at a non-accessible picnic table – or possibly no table at all.
Freedom Tent (discontinued :( of course)
We started with our old three-person tent, sleeping on the ground.  Gravity helped me down and my husband helped me up.  We soon discovered the wheelchair-accessible Freedom Tent from Eureka.  This tent (no longer in production, unfortunately) comes with a non-threshold vestibule for storing the wheelchair and side openings for better positioning when entering the tent.  Gravity and assistance were still my means to get down and up, however, so the situation – however much improved – was still not ideal.

Solving the problem of transferring between the wheelchair and sleeping bag, we bought a double cot, which was the height of my wheelchair and was sturdy enough for transfers. 

Glacier Tent by Browning
In order to fit the cot, we bought a huge tent.  It seems that tent size corresponds with age in a parabolic curve.  The younger and older you are, the larger your tent.  My tent is large enough to accommodate a double cot, my wheelchair, and all of our personal gear.  It has doors on both sides, allowing both people to exit from their own side, which is important, since the cot uses up the entire tent length, wall to wall.  I am able to roll over the door’s threshold by holding it down with the carpet we’d taken from the floor of the car’s trunk, storing it rolled up in the tent when not in use.  All of this is brilliant, of course, as long as you don’t care about carrying large, heavy objects.   Yes, we are now the ones car-camping in the huge tent!

Along with the tent and cot, the other big consideration for wheelchair camping is the toilet.  You simply can’t rely on finding accessible toilets, stalls, and restrooms wherever you want to stop, and many times there is no restroom at all.  When you can no longer squat in the woods, a simple activity becomes exceedingly complicated and limiting.  For women it is doubly complicated.  This issue became a special concern of mine last fall, as we prepared for a road trip from Seattle to the Arctic Circle via the Canadian Yukon and Northwest Territories, both of which have almost no accessible restrooms and long stretches of road with no restrooms at all.

Our “brilliant” solution – which turned out to be not very brilliant or novel, since the internet already had a name for it, and it is well-known among the RV crowd and campground hosts  – was a bedside commode in a privacy tent.  The bedside commode was just a generic one, with strong attached bars, used by elderly and disabled people at home and sold online with bags and desiccators that can be thrown in the garbage.  The tent in which it was housed is called a privacy tent – also sold online, and advertised as a place to change clothes, take a shower, or use a toilet while camping. It is just big enough for the commode and a wheelchair.  It is easy to set up, so it is a great solution for long road trips with good pull-off opportunities.

In order to fit all of these new toys, as well as my wheelchair and our other camping supplies, we bought a cargo box for the top of the car. 

With these new toys and an able-bodied companion, I am able to camp in developed campgrounds and undeveloped forest wilderness.  Yes, it is car-camping, and yes, I have a big tent.  But, I am camping.  And I am starting to wonder about an accessible RV…

Wednesday, September 14, 2016

Flying with a Wheelchair

Flying with a wheelchair can be no problem.  If the ground crews are responsive and efficient, the equipment works, and nothing gets damaged or lost, then flying with a wheelchair is similar to the typical cattle-car experience known as flying today.  If, however, something goes wrong – especially the loss or damage of what amounts to an extension of your legs—it can be an unforgettable and unforgivable nightmare.  

You can find blogs about flying with a wheelchair all over the internet.  I wanted to add my voice to the information feed, but I felt that in order to differentiate my post, I should compile the most comprehensive list of advice out there, so that an information-seeker need not look further to feel prepared.  Well, that was my problem with grad school, as well.  I would spend so long gathering information, trying to be as complete as possible, that I would only reluctantly and much belatedly get started on the research itself.

I recently flew with my husband, Ted, from our home in Seattle, WA to Monterey, CA for a long weekend.  I decided to use this experience as a jolt to my preparation penchant and to finally write something.  So, no, this is not a complete list, and yes, someone serious about flying with a wheelchair should gather additional advice before embarking. However, this is my meager contribution to a small but important field.  And now it’s out there. 

1. Plan ahead and early
I like to plan; it’s ingrained in my personality, and it makes me happy.  However, I am married to someone who doesn’t believe in planning.  He is able to use a “Field of Dreams” sort of Jedi mind trick: If you want it, we can make it happen.  Granted, sometimes it works, and the results are all the more gratifying, because you haven’t wasted your time sweating the details.  Sometimes, however, the results are disastrous, and you end up not being able to go to the bathroom for twelve hours.  Life with a wheelchair, unfortunately, demands planning in advance – especially when travelling solo.  Flying with a wheelchair, in itself, does not require advance planning, but seat selection does.  If you have seating requirements (location, not in a bulkhead row, arm rest that moves), it is important to book as far ahead of time as possible to ensure that you get your choice of seat location.  Caveats: bulkhead seats aren’t usually given out until passengers arrive at the airport, and desk agents often don’t know which seats have movable armrests or even where the lavatories are.

2. Arrive at the airport early
Are you sensing an “early” theme?  Even after multiple years of using a wheelchair, I am still guilty of never believing that things will take as long as they do.  They do.  I strongly advise wheelchair travelers to check in at least two hours early for domestic flights, because of the possibility of waiting in lines, trying to sort things out with clueless agents, and going through security, along with the necessity of being at the gate at least 45 minutes before departure time (you will be the first to board).  You may not need this much time; then again, you may get the TSA agent who is intent on doing everything possible to protect the airlines from dangerous wheelchair-driving passengers.

Aisle Chair
3. Tell an agent ASAP that you will need an aisle chair for boarding
Sometimes they already have your information and requirements in the computer.  Sometimes they are organized and prepared.  But sometimes at least one of these things is not true.  Given that, I try to flag an agent as soon as I can to let them know that I’ll be needing an aisle chair, giving them time to find and request one before boarding begins.  Some airlines prohibit passengers flying with wheelchairs from checking in at the kiosks, in which case you’ll meet with an agent at the check-in desk directly, but you’ll probably have to ask to figure out which line to use (hopefully they will direct you to the premiere/VIP line).  Some airlines have all passengers (even those with wheelchairs) check in at the kiosks, in which case you’ll have to hunt down an agent, who may or may not care (in the latter case, that means you’ll first tell the gate agent at the departure gate).

4. Take as few suitcases as possible
Remember that you have to carry what you bring.  Even if you check baggage, you have to carry it to the departure check-in desk and from the baggage claim.  For some reason, many airports seem to have uphill ramps to get outside, adding an additional degree of difficulty.  When travelling by myself, I like to check as much of my luggage as possible, so I don’t have to carry it (don’t forget to make use of the curbside luggage check, when possible). The downside, though, since you are invariably the last one off of the plane, is that you will be so late in getting to baggage claim that you will have to go on a search for your luggage.  Travelling with someone is much easier; that person can carry all sorts of luggage – or better yet, they can load you with luggage on your lap so that you can’t see, and then they can blindly push you through the crowded airport.  Smaller bags can sit on your lap.  If you must carry a rolling suitcase, there are suitcases made especially to attach to wheelchairs.  Or you can just use a carabineer to attach the suitcase behind your chair and hope that it doesn’t twist around too much.  Also, remember that medically-necessary items travel for free (but you should remember to bring your prescriptions).

5. Security might not be as bad as you fear: You might get to bypass the long waiting line in favor of the expedited VIP line (ask), you don’t have to take off your shoes to go through security if you can’t (or if it’s too difficult), you don’t have to go through those new full-body scanners, and you get a full-body massage (the manual pat-down).

6. As soon as your things get on the conveyor belt to go through the scanner, wheel in front of the gate that bypasses the full-body scanner.  Make sure one of the harried TSA agents knows you are there and waiting and calls for a “(Fe)Male Assist!)  Do not wait until everyone ahead of you in line has gone through the scanners to do this.  You may feel like you are cutting in line; this is not true – you are not in their line; you are just crossing over to yours.  This is the weakest link in the TSA process, since you have to wait for a free assistant of the appropriate gender to come and let you through the gate and conduct the scan.  The sooner you can start the process, the better.

7. Make sure you designate a person to be responsible for your things as they come out of screening.  Many times a TSA agent will ask; sometimes they forget.  If you don’t have a travel companion to take responsibility, make sure you remind your TSA screener to do so.  Your screened items will invariably finish screening long before you do.

8. Be prepared for screening to take a long time and be unpleasant, and you may be pleasantly surprised.  Everyone who cannot walk unassisted (without holding onto something) must submit to a manual screening, the pat-down.  After waiting for a gender-appropriate screener, you will be taken to a quieter spot in the midst of the turmoil for your screening.  Remember that you have a right to ask for a private screening. Personally, I have never asked for a private screening, because I can’t even imagine how much longer it would take and because I figure that the number of people who find it titillating to watch a middle-aged woman get a pat-down compared to the number of people in a hurry to catch their plane put the odds in my favor.  If all goes smoothly, you may even beat your travel companions through security; you may also get a screening agent who training someone, is new, or is maddeningly thorough.  After screening you, the agent will test the wheelchair, by wiping some paper on various points on the chair and sticking the paper in a mysterious machine.  If you haven’t removed your shoes, the agent will probably clean your soles with this magical paper as well.  Final warning: if you have been spending time on manicured grass, it’s possible that the mystical machine will not like the results; I am guessing that it’s because well-manicured grass demands fertilizer, which contains nitrogen, which is also used in making bombs.  This can cause anxiety, the need for multiple supervisors, and lots of wasted time.

9.  Don’t forget to ask at the gate to get a gate-check claim ticket.
Since your wheelchair will be gate-checked, you should ask at the gate (where you board) for a gate-check claim ticket.  You will need to answer questions about the presence and type of battery (most of them are dry-cell) and the weight of the wheelchair.  This is a good time to double-check that an aisle chair has been ordered and will be there for you. 

10. Different crews and planes allow different boarding methods
Usually you take your own wheelchair down the gateway to just outside of the entrance to the plane, where you transfer to an aisle chair, and then the staff wheel you onto the plane and to your seat.  Sometimes you transfer to an aisle chair at the gate, and then the staff wheel you to the plane and then to your seat.  Sometimes, if you ask, you can roll your own chair to the bulkhead seats (assuming you are sitting there), without transferring to an aisle chair at all.

11. Bring a large bag and put all of your removable wheelchair parts in it before boarding the plane.
I always travel with a canvas bag large enough to fit all of the detachable wheelchair parts.  At the entrance to the plane, while I transfer to an aisle chair, Ted transfers all detachable parts (foot plates, seat cushion, and seat back from my manual chair) from my chair into my canvas bag, which we carry on in addition to our two bags.

12. Give the ground crew specific instructions about how to move and store your wheelchair (every chair is different, as is the level of knowledge of every crew member)
My manual chair is folding, so we simply demonstrate how to collapse it.  I take the key for my battery-powered travel scooter, so we show them how to flip the lever to manually push the scooter, how to lower the handle bars, and how to disengage the battery.  The Freedom Chair is too wide to fit through the door from the jetway down to the tarmac, so we instruct the crew in how to remove the wheels (it fits then).

Keep in mind, however, that just because you inform the departure ground crew, the arrival airport crew may have absolutely no idea how to operate the chair.  You could ask the departure crew to call the arrival crew and let them know the important information (how the wheels detach, for example).  They may do so; or may not!  Travelling with an able-bodied person and sitting near the front may help solve such a problem, because that person can exit the plane at the beginning of the line and wait outside the plane door to instruct the ground crew.

13. Passengers needing assistance are the first ones on and last ones off the plane.  This lateness can be a problem for retrieving luggage at the baggage claim and the gate.
Usually, Ted disembarks with the rest of the passengers and waits by the plane entrance, so he can offer advice to the ground crew in charge of the wheelchair and make sure that nobody takes the wheelchair.  (Really!  It happened twice: When Ted and I finally got off of the plane, my wheelchair was not there.  Both times, we finally found it in the parking lot, leading me to believe that someone mistook it for an airport wheelchair – even though I had removed the foot plates, seat cushion, and the back!  Next time I’m going to spray paint my name and a skull and cross bones on the seat sling).  The other option is for the able-bodied person to exit early, have a chat with the ground crew (advice about the wheelchair and making sure they save it for me), then going off to baggage claim to claim the bags before it’s too late.  Of course, these strategies work much better if you’re near the front of the plane. 

Final Advice: Travel with a Rock Star
I read in someone else’s blog that an important key to travelling with a wheelchair is to travel with a rock-star support person/travel companion. I realize that that isn’t possible for everyone at all times, but I admit that it is my most important piece of advice as well.  I have been able to do and see so much more just by travelling with an able-bodied person who thinks creatively and is willing to help.  At the most practical level while flying, it helps to have another person monitor, collect, and/or carry your luggage and make sure nobody takes your chair.

There are horror stories about flying with a wheelchair; there are also great experiences.  Make sure you allot more time than you’d ever think necessary, and don’t assume that anyone knows anything about your chair.  Remember that most airplanes are not covered by the ADA.  In 1986, Congress passed the Air Carrier Access Act, mandating the Department of Transportation to develop new regulations ensuring that passengers with disabilities would not face discrimination.  These regulations were published in 1990, and a summary can be viewed online at

Additional sites with advice about flying with wheelchairs (not an endorsement; just some links):

Happy Skies!

Thursday, September 8, 2016

Monterey, CA

Monterey Bay
Many, many years ago in college, I spent a beautiful summer in Monterey, CA, studying Russian at the language institute.  Classes all morning and homework in the evenings left several hours each afternoon where I was free to explore the peninsula and watch the otters.  In the years after graduation, I made several trips back to the Monterey Peninsula – usually to go kayaking and always wonderful.

Many years later, living in Seattle, I began to wonder if indeed these idyllic memories rang true (rather than hyperbole implanted by the tourist bureau and aging memory).  I finally got the chance to go back this summer, and the short answer is “yes.”  Monterey is as fantastic as I remember.   I was even more thrilled to discover that the peninsula was wheelchair-friendly.  In fact, after the challenges of wheelchair hiking in the Washington mountains, it was downright magical to find easily-accessible trails.  We spent three days in Monterey, enjoying tourist attractions, recreating memories, and searching for otters. 

In the old town section, many of the buildings are preserved from the first half of the 19th century when the Spanish and then the Mexican governments ruled this part of California.  The wheelchair accessibility in this area is not bad, and the neighborhood is slated to upgrade its accessibility, starting September 6, 2016.

Immortalized in Steinbeck’s Cannery Row, these areas evoke the heyday of the fishing and canning industries in the first half of the 20th century.  They are now a hotbed of tourist activity, including hotels, restaurants, and shops.  These areas are mostly wheelchair-accessible.

Downtown Pacific Grove
We avoided the crowded, tourist-filled seafood restaurants and chose the higher-rated restaurants on Yelp.  Most of them were in the quaint, pretty, homogeneous town of Pacific Grove.  Because the town has preserved its Victorian architecture, wheelchair accessibility is mixed, but staff was always willing to help us find accessible restrooms nearby, if needed.

Monterey Produce Market
As a recovering vegetarian, I think that one of the many best things about Monterey is its location next to the Salinas valley, dubbed the “Salad Bowl of the World.” For all but the dedicated carnivore, no visit is complete without a trip to one of the local produce markets, farmers markets, or farm stands. We went to all three and happily availed ourselves of fresh local strawberries and artichokes.

Perhaps the most famous tourist attraction in Monterey is the Monterey Aquarium.  Rightly so.  The exhibition on the jellies alone is worth the insanely expensive price of admission (hint – many hotels offer a discounted ticket valid for two days).  The aquarium and its restrooms are wheelchair accessible.


Sea Kayaking and Sailing
Although we did not have time to go this trip, some of our fondest memories are from kayaking and sailing on Monterey Bay, surrounded by otters and seals.

Marine Mammals
Monterey Bay is well-known for kelp beds, marine research, marine reserves, scuba diving, and marine mammals, including otters, seals, and whales.  Otters can be spotted playing in the water or floating in the kelp beds.  Seals can be found lazing on the beach, soaking up sun on the rocks or buoys, or swimming in the water.  Whales are best seen on one of several whale-watching boatrides.

These are not rocks!
Perhaps the cutest animal ever

One of my favorite parts of Monterey is the coastal trail.  It is a 29-mile paved, two-lane, multi-use trail that goes along the coast from Pacific Grove to Castroville.  There are continuous views of the ocean, cypress trees, beaches, rock formations, marine animals, the sun or moon, and breath-taking vistas – sometimes visible from the trail, sometimes accompanied by a bench or picnic table off of the trail, and sometimes down a short, hard-packed sand path leading off of the trail.  This is a wonderful trail for the Freedom Chair, taking advantage of its levers to cover the lengthy miles.

The biggest surprise awaited me at Asilomar Beach.   My expectations of beauty were well met.  The beach is covered with soft white sand, which was interspersed with dunes of wild gardens of coastal plants and flowers.  Looking out to the ocean afforded amazing views  -- otters playing in the water as the waves crashed against the rock formations, under a sky blazing with the colors of the setting sun.  What I did not expect, however, was the incredible accessibility provided.  There were numerous disabled parking spaces designated.  These spaces were located next to entrances to wide, level, accessible trails of hard-packed sand mixed with boardwalks.  The surfaces of the trails were usually hard enough for any type of wheelchair; in the few sketchy spots, the Freedom Chair was a perfect match.  There was even a boardwalk from the road down to the state beach (of course the boardwalk ended at the start of the beach, leaving a large swathe of deep, dry, soft sand between the boardwalk and the ocean.  The mountain bike tires, so effective on harder sand, didn’t go anywhere in this softer, deeper sand.  It would have been a perfect opportunity to try the Freedom Chair’s beach tires.

The downside of such an amazing place is no surprise – insanely expensive lodging.  One cheaper option that comes to mind is the Asilomar Conference Center attached to the state beach.  Of course, availability is limited for non-conference-attendees, and even more so for guests needing ADA accessible rooms.  So, plan ahead and Happy Trails!