How accessible is accessible enough?

The public pool in my city doesn’t have a visible pool lift to accommodate wheelchair users. Apparently you have to call in advance to arrange that the lift be brought (from wherever it is) to the pool that day. I find myself wondering if this is accessible enough or not.

Equal access is a tricky thing. Is it equal access if you have to jump through a hoop in order to gain access? Ideally, equal access means that I should be able to spontaneously access something, without planning, any time I want to. That’s how it is for able-bodied people after all. If an able-bodied person wanted to go swimming at the public pool RIGHT NOW, they could. However, if I wanted to go swimming RIGHT NOW, I couldn’t. I’d have to call first and make sure they got the pool lift there in time.

This same scenario pops up all over the place. Accessible taxis often have to be scheduled in advance. Airport shuttles, same thing. Want accessible concert tickets? Sorry, you can’t buy those online, you have to call the box office.

Is it acceptable to have to wait or go through other avenues to secure accessibility? If you’re willing to surrender spontaneity, then yes. But who wants to do that?

An argument could be made that it costs too much to provide citywide access to pools and therefore since there’s not a huge demand for it, the scheduling solution works best.

However, I have a problem with assuming that there’s not a huge demand for something that disabled people might use. This is like a store owner who says, “I don’t have a lot of disabled customers, why should I put in a ramp?” when his store is up a flight of stairs. Of course the store owner doesn’t see a lot of disabled customers — they can’t get in the store!

Obviously, having immediate access to accessible tools like a pool lift is an optimal situation. But secondary to its usefulness, these tools advertise to the general public that, “Hey, this place is accessible! Tell your friends and family!” Then perhaps more people show up and use the device. Otherwise the presumption is that there’s no lift, and no means of easily getting a wheelchair user into the pool, and therefore not accessible even though it might be (with a phone call).

London in a Power Wheelchair

I recently had an amazing time in London despite traveling with an electric wheelchair AND having a few drama-filled incidents. I learned a few things and wanted to share them with people in chairs who might want to travel there.

Prior to the trip, my main concerns focused on transportation and hotel room accessibility. I was not super concerned with museum or attraction accessibility mainly because I didn’t have my heart set on seeing anything specific. So I did spent a bit of time researching how to get around and where to stay.

Quick Summary (for those of you who don’t want to read below).

1. Almost all taxis in the city have ramps. Ramps can be steep but with help are possible.
2. Taxi to/from the airport was easy and did not require reservations.
3. If you are not a good or confident driver, do not rent a car there!
4. The bus was a great mode of transportation, and free for wheelchair users.
5. Ask about ticket discounts for you and your “caregiver.”
6. Most major attractions are accessible.

Hotels / Lodging
I was traveling with two other people and the preferred option was a room that had beds for each of us. Had there been only one or two of us, a regular hotel room would have sufficed. It was difficult finding a large hotel room that had two beds and a sofa bed or roll-away either because these rooms had been booked or the configuration is very limited. Finally we decided on getting a 2-bedroom suite for the time we would spend in London (split over two different hotels). It was slightly more expensive on a per-person basis, but we each ended up with our own rooms. I did have to sacrifice a roll-in shower since the suites unfortunately were not fully wheelchair accessible.

We also wanted to stay in a castle for at least one night. We ended up spending a night at Thornbury Castle, near Bristol. It was a small, 26-room castle but was exactly what we wanted. The accessible room was amazing, but the bed was very high off the ground. I ended up switching rooms with my friends since their bed was lower but it was still quite high. But overall it was one of those places where you would make sacrifices just to say you spent the night, and I did!

Thornbury Castle
Bed at Thornbury Castle

Overall we stayed in three places:
Park Plaza Westminster Bridge: Nice, modern hotel. Not near a lot of food options but easy on/off for bus transportation and close to a lot of attractions. Amazing 2br suite. Low, memory foam beds. I slept on the sofa bed since it was easier to move around on.
Thornbury Castle: About 2 hours west of London. Amazing building and grounds. Great rooms, food was just ok. Not much to do in the immediate area, but great for a day or two.
Plaza on the River Club: Smaller, boutique-feeling, nice sized rooms and great restaurant. Few food options nearby and a bit more time required to get to things. Lower beds, again I slept on the sofa bed since it was easier to move on.

Transportation
I was excited that pretty much all of the taxis in London have ramps. We ran into a few instances where the driver was grumpy about using the ramp but they got over it! Most drivers were happy to help and this was important since the ramp was steep and required assistance. My anti-tip wheels made boarding the taxi without help difficult unless the curb was very high! There are also Mercedes Vito cabs, which are bigger from a storage standpoint but the headroom is worse than in the regular cab. I am a bit tall in my chair so I spent a bit of time crouched down when we were driving.

We did not pre-reserve a taxi to get from the airport to the hotel and this worked just fine. We exited the airport and waited in the taxi rank. Initially we thought we would only fit into the Mercedes Vito so we waited extra time for that. However, on the way back to the airport we took a regular black cab and we fit, even though it was tight. There were three of us with three large suitcases and carry-ons…and my wheelchair of course, which I stayed in.

The bus turned out to be our primary mode of transportation while there. Using Google Maps we had a fine time getting routes and the buses have built in ramps. Transportation is free for wheelchair users. Most of the time the bus worked fine. If the curb was too high or too low, I ran into some minor issues. The first was that the curb was too high and the ramp could not deploy. I rolled to a different bus stop instead. Another time the bus stop did not have a curb so the ramp was steep. I charged at the ramp but could not get up it. Luckily a few passers-by helped push me in. I noticed that people there were happy to help.

We rented a car in anticipation of spending 4 days on the road. Within an hour we had decided to look for a driver since it was crazy driving there! We eventually decided to turn in the car the next day and alter our trip a bit. It all worked out in the end but I learned that I will probably pay extra to hire a private driver if I cannot find an accessible tour. Unfortunately due to the last minute nature of things we could not find a private driver or accessible tour of the things we wanted to see. So my friends went themselves and I spent the day back in London doing some exploring.

We took the National Rail once from London to Cambridge. After buying tickets we went to the information booth and told them I needed a ramp to board. They gave me direction and sure enough someone was there to put the ramp down when it was time to board. Upon arriving at Cambridge station someone was waiting to put the ramp down again. It worked well. The only issue with trains is that the station may not be accessible, so make sure to check in advance if you are concerned. We avoided taking the tube and found the bus to be a fine alternative.

Attractions
We bought the London Pass and it worked out but felt like we broke even on the 5 day pass. The London Eye was not included on the pass but we did get a discount for me and one other person. It was very accessible. We also went to Westminster Abbey, Tower of London, took a river cruise, went to a bunch of museums including the British Museum. Saw The Bodyguard Musical, went to Windsor Castle, and finally hit up Buckingham Palace and Harrod’s. Make sure to book your Buckingham Palace tickets in advance and make sure you tell them you need the accessible tour. You will be pleased with the results!

Windsor Castle

Wheelchair Drama
On the day I was to explore by myself, I broke my wheelchair charger. The cord got tangled up in my wheels as I was turning and I pulled it off the table. I saw a white flash, a puff of smoke, and it was dead. I had 4 days left on the trip and panicked immediately. After spending a few hours on the phone the best I could do was get a new charger delivered overnight to me at the hotel. Long story short, I am going to bring two chargers next time I travel!

The only other incident I had with my chair occurred on a particularly rainy day. I had brought an emergency plastic poncho with me (which is great to cover myself AND my chair controls). However I was not paying attention and a front wheel ran over the poncho while I was rolling and the whole thing was pretty much yanked off my body and got stuck up in the front wheel! Fortunately as I kept rolling the plastic stretched and broke and was eventually just rolling around my wheel as I went. I left some of it on the wheel for posterity. The rest we had to pull off by hand.

Other than that, the trip went smoothly. It was misty and rainy most of the time (middle of September) but we really only got stuck in a downpour once.

In hindsight I definitely worried about transit much more than I should have. The city had lots to see and things were easy to get to. Now go book your tickets!

Stop asking fearful questions once you’ve answered them

I was brainstorming a list of some of the things that can hold a person back. The first thing that came to mind was FEAR. In fact a few of the other things that came to mind like “worrying about embarrassment” and “worrying about falling” are really just the same — fear.

I find myself wrapped up in fear sometimes without even thinking. Whenever my mind wanders down that road filled with “What if?” questions, inevitably the questions revolve around fear. “What if there is no ramp?” “What if I get stuck?” and so on.

Asking those questions are important…ONCE. Being prepared is a great thing. But if you have created your methods for being prepared, then it’s a waste of time asking those fearful questions ever again. Usually those questions end up becoming an excuse not to do something.

It’s a great thing to ask different types of “What if?” questions — questions like, “What if I go and have a great time?” “What if I meet someone new and exciting?” “What if I learn something awesome?”

Those questions always seem to have different answers…which is why I love them!

Road tripping with muscular dystrophy

I spent the last three weeks traveling with some extended family members – particularly an aunt, uncle, and my two cousins. We spend about 48 hours in my van driving to-and-from Florida, stopping at many hotels and places along the way. We spent a couple weeks in Florida where the weather was hot and humid, but apparently better than what we left in Wisconsin.

If you’ve read my blog you know I am a big advocate for traveling despite a disability, so I thought I’d share some observations from my trip.

Hotel beds are getting softer
We stayed at mostly 3 and 4 star hotels (via Priceline bidding of course!) and it seemed like the mattresses and mattress toppers were much softer than usual. I initially thought that this might have been because I was physically weaker but my family thought the beds were really soft too. I would like to find a solution to this.

The wheelchair tie-downs in my van were easier than I expected
Usually I just drive my chair in and transfer to my driver’s seat and go. But since someone was actually going to be in my wheelchair we broke out the tie-downs. I thought this would be a pain to do every time we stopped but it turned out to be very fast once we got the routine together.

The amenities at non-luxury hotels are usually better and cheaper or free
I think the best hotel we stayed at during our trip was a Comfort Inn in Murfeesboro, TN. The room was huge and we had free parking, Internet, and breakfast. We also had a crazy-haired (think Something About Mary) and perky desk clerk that was straight out of a movie. The last hotel we stayed at was the Hyatt Regency in downtown Cincinnati. Parking was expensive, the room was small, the Internet was not free, and overall it made me realize that I would never pay full price for a Hyatt stay, ever. It’s just not worth it.

A can of WD-40 comes in handy
My wheelchair was squeaking even before we left so we sprayed some WD-40 on my anti-tip wheels and that solved the problem for just about the right amount of time. Then while down in Florida I picked up some sand and one of my front wheels started making noise too. Sprayed more and that solved the problem.

Accessible seating at concerts can be flexible if you run into the right people
I surprised my cousins with tickets to the Lady Antebellum concert in Atlanta. The tickets I bought were not wheelchair accessible, unfortunately. However, the ushers at the event found a spot for me and my aunt while my cousins sat in our ticketed seats. It worked out great!

Sometimes the best spot is in air conditioning with a nice view
I love being outside…in nice weather. But it was 90s and humid almost every day and with the sun this can be unbearable at times. So sometimes I elected to look out the window at the amazing ocean view from the condo and read instead of going down by the pool or to the beach. It was comfortable and required no sunscreen!

A manual wheelchair would have usefulness
There were a couple instances where it would have been nice to have a manual chair as a back-up. For example it would have been easier to get into my friends’ house without having to build a ramp from scratch (which still wasn’t a huge deal, just cumbersome). We didn’t have room in the car for my portable ramps, but I might make room next time. Also, I had some minor stress during the drive about “What happens if we need to get towed?” I have not dealt with that situation and wondered whether I’d be able to get transportation or have to transfer into a tow truck, etc. I could leave my power chair in the van and use the manual one if necessary.

A $20 office chair can make a difference
The bathrooms at the condo didn’t have wide enough doors to get my chair through. So instead of going down to the common-area bathrooms downstairs I bought a $20 rolling office chair from Walmart to get in/out of the bathroom. An inconvenience, yes, but it was good exercise and it’s not like I was going in there ten times a day.

Overall the entire trip went very smoothly. Very few of my “worries” ever materialized (as usual) and when minor things came up, they were easily remedied. It was great having family around to help out, although I think they’d probably say I was more of a smart ass than an inconvenience.

 

 

 

Sometimes it just takes a small push

There are times when I feel stuck. I could be physically overwhelmed or mentally blocked.

Take for example getting out of bed. When I am traveling and the hotel bed is a little too mushy, I can easily get stuck while trying to get in or out. Normally I can remedy this myself by using momentum and repeated attempts to get where I need to go. But when help is readily available, I notice that the assistance I need is usually quite minimal. Sometimes it’s as easy as a quick pull one direction or another and the movement is completed.

I have noticed this to be true on so many occasions. For example, if I am transferring from one seat to another, a slight push or pull in the right direction makes a transfer very easy. Without it I might struggle for ten minutes trying to get over the gap.

When my wheelchair gets stuck going up a small step, sometimes it just takes a quick bump against the back of my chair to get me past the hurdle. This saves me time trying to attack the step or find another route.

There are also times when I am working and can’t seem to get myself going mentally. I waste time surfing the internet or by procrastinating. I find that if I can just commit myself to working for five or ten minutes, I can usually jumpstart my entire day.

Whenever I find myself in a situation that seems too difficult or impossible or too much work, I have to recall all those instances where a little nudge in the right direction made everything start moving again — times when a small push or a pull or a tug or a bump made all the difference and was just what I needed.