Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!
Showing posts with label accessibility. Show all posts
Showing posts with label accessibility. Show all posts

Thursday, July 4, 2013

Accessibility Tales

We had a fun vacation in June spending much of our time in and around Pennsylvania photographing freight trains and seeing baseball games with a couple days in Connecticut for our nephew’s high school graduation and party. As is usually the case, this was a trip of extremes in accessibility.


Winners and Losers

Pit Stops and Side Trips

Most of the McDonalds we went to had the larger wheelchair and family stalls with enough room for a chair without having to climb over it to use the toilet or get knocked in the head by the baby changing table. That’s also enough room to safely change a baby with a toddler in the room. We stopped at several McDonalds that had the door near the back labeled as a handicap door with easy entrance for a chair and no chicane to maneuver. I’ll also mention that McDonalds openly offers their restrooms as a “no obligation” stop for travelers and in general McDonald’s restrooms are the cleanest I see in travelling. They are maintained constantly.

Every Sheetz we went to had the large wheelchair stalls at the back of the ladies restroom too with plenty of room to maneuver and transfer. However a few of them had displays crowding the entrances to the aisles making it impossible for a chair to get through.

The Turkey Hill convenience store right next to the Turkey Hill Experience failed miserably with a sign for public restrooms that was actually the employees only bathroom and too crowded to get a chair to. However, The Turkey Hill Experience was a fun attraction and wonderfully accessible and accommodating. (Can I get big thumbs up for all the scoops of ice cream you care to sample?)

Baseball Parks

Oriole Park at Camden Yard does not have a family/wheelchair restroom on any level and the largest stalls still require backing in and parking the chair next to the commode making a walking required transfer. The Fan Store was really not set up for wheelchairs, but they were accommodating. (So were the fans, even to someone wearing the “wrong” hat.)

In the minors, Atlantic League Lancaster Barnstormers’ newer stadium has family/wheelchair restrooms and the stadium in general is very wheelchair-friendly. The Reading Fightin Phils play in the oldest stadium in the Eastern League. They have tried to retro-fit for wheelchair access, but handicap parking on a curb with the passenger door opening into a grass bank and the wheelchair access seats being in outfield obstructed view made the experience less than ideal.

Hotels

The hotels this trip were feast or famine. The second night we booked 2 days at Super 8 in Harrisburg PA. A shower chair was not required in the original ADA in 1991 but has since been added to the hand shower required in hotel bathrooms in the 2010 ADA. The Harrisburg PA accessible room had a shower chair, but the bar for the hand shower was empty. The shower had been changed and the hand shower never replaced. (I improvised with a cup for hair washing and rinsing, but that takes more water!)

Shower chair at Super 8 in Lewistown, PA

We stayed at Super 8 in Lewistown, PA where there was no shower chair and we had to request one. They found a chair but it was too big for the tub and wouldn’t sit safely flat. The tub was also higher than my knees; there was no way I could step over it to get in. That night was another improvised part shower and part sponge bath from outside of the tub.

Stamford, CT Super 8. too short toilet and 
those 3 bars are it for the entire bathroom

Our 2 nights in Connecticut at Super 8 in Stamford were unquestionably the worst accessible accommodations of the trip. The spacious enough bathroom had a total of three grab bars clustered around a toilet that was less than 18” high. The shower chair didn’t fit in the tub. The door had less than 8 inches of space from the wall when opened and entrance/exit to and from the room wasn’t possible unless the bathroom door was closed. That's a fire hazard, especially if anyone, regardless of disability or not, is in the bathroom. The room was cluttered and while there was a microwave and refrigerator, they couldn’t be reached by someone in a chair let alone used.

Super 8 in Stamford CT
I'd never seen an "accessible" shower with no grab bars before.

* This isn’t meant to warn anyone away from all Super 8 properties. It’s just the ones we stayed at this time. In 2011 we stayed at a new Super 8 in New Jersey in a room that was Accessible Heaven.

There were two hotels on our trip that I give an absolute stellar rating.

America's Best Value Inn, Harriburg, PA
Accessible done right!

We stayed at America’s Best Value Inn on Front Street in Harrisburg, PA. There was room enough to move around in my chair and the bathroom was fantastic. The shower chair was similar to mine at home with a bench that comes outside the tub to transfer into the shower while sitting rather than stepping over the tub side. There were ample grab bars in the shower, toilet and sink areas.

The Red Roof Inn in Harrisburg was top notch too. It was recently remodeled and is a pet-friendly property. Talking to the front desk clerk in the morning I learned pet-friendly means all hardwood floors. That’s something to note because those pet-friendly floors are also wheelchair-friendly! This room had a roll-in shower and the room was well-ventilated and the drain set so well that little water escaped the shower area and the floors remained relatively slip-free.

Summary:

There are still some real losers out there for travelers with disabilities, but don’t let that keep you home! There are some real winners too. I get a business card at the hotels where we stay to make sure I don’t stay at the losers again and make a point of staying at the winners when we travel to the same area. I’m also sending my praise or criticism with the hotel to corporate headquarters and franchise owners.

If you’ve had great or not-so-great experiences in your travels with whatever level of disability, I welcome you to share them in comments! Also if you have an MS or disability blog and would like to share links, I’d love to do that too!

Friday, May 24, 2013

Book It, Then Block It


I have some travel advice as we start into the long weekend when a lot of people travel. David and I do a fair amount of recreational travel, taking weekenders to pursue our railroad photography hobby and see some minor league baseball. When traveling with challenges, planning ahead is important.

I try to remember to pack snacks and bottled water for taking medications and because I know that becoming dehydrated happens faster and is an issue for me. Dehydration can just totally drain me physically and that can definitely dampen the spirit of fun when we travel. I also keep a blanket in the car. I have secondary Raynaud’s with the MS which makes me very sensitive to cold. Even in the summer the air conditioning gets to me and a blanket keeps me comfortable without parboiling my husband in his own sweat. (smile)

Another important thing is a hotel reservation. When we travel I’m in a wheelchair. While I use the walker or “furniture surf” grabbing the familiar stable things in the house sat home, it’s much safer to use the wheelchair when I’m in an unfamiliar place and will be going more than a few feet. When we make a hotel reservation we, of course, always reserve an accessible room. But that’s not enough to ensure that we’ll actually have an accessible room!

Last year when we checked in to the hotel at a conference we attended, my husband and I went to the desk together; he walked up and I rolled up. The clerk at check in addressed both of us, so I was seen. She gave us our keys and we went to the room. The hallway into the bathroom was narrow. There were no grab bars in the bathroom, no hand shower and a low commode; nothing was in compliance with even ADA minimums. We called the front desk to complain and get switched into the room we reserved. She said they were "out of handicap rooms.”

Out of them? We reserved an accessible room, how can they be “out of them?” I reserved with a credit card. If we just didn’t show up they’d charge my card, but they gave up our room anyway? There was still no excuse for not telling us, me sitting right there in a wheelchair, that the room they were checking us into was not accessible.

My research after the fact told me that hotels notoriously overbook accessible rooms. Reserving an accessible room is not a guarantee that you’ll have one. After making a reservation online or when making one on the phone you need to call the actual hotel and say “block the room.” That means they have to have an accessible room for you when you check in.

I don’t think that's okay. It is absolutely necessary, but not okay. Personally, I don’t think it should even be legal to offer to reserve accessible rooms and then not have one at check-in. Something needs to be done to make it impossible for hotels to reserve more rooms that they have. It shouldn’t be difficult to only be able to reserve four accessible rooms a night if you only have four accessible rooms. After four are reserved for any given night, no more show up in the system. Not rocket science or even major computer programming.

But, until a time when that error is fixed, we have to do it for ourselves. Make sure you call the hotel you’ll be staying at and tell them you just made a reservation for an accessible room and you want to block it. Also, while saying “handicap” may not be politically correct, don’t be too proud to use the word. We stopped at a hotel deciding not to drive all the way home one night and asked if they had any accessible rooms available. The clerk said “all of the rooms are accessible.” She must have thought we were asking if they have doors. Saying “wheelchair” made a huge difference in her interpretation. Use words like handicap or wheelchair when reserving rooms in person and when calling to block a room mention that you want to be sure there is a correct room when you arrive. Just because”the system” or some of the people in it aren’t up-to-date, doesn’t mean you should give up any of the things available to you to enjoy traveling.


At another time I’ll talk about the wild differences in quality an actual accessibility in different hotels and different places.

Saturday, June 30, 2012

A New Perk


There has been and will be again complaints about things that just don’t work as “accessible.” I think the people who design accessible hotel rooms, doorways in restaurants, public bathroom stalls, should be required to spend a day in a wheelchair and a day with a walker with a knee or both in a splint to freeze it so they understand for whom they are designing facilities. Really, try to maneuver a wheelchair between two doors that have a hallway with a right angle turn in between them, or step over a door frame that rises up an inch with a knee that won’t pick your foot up much higher than that. Stand in a shower with bad balance when there is not a shower chair. My husband and I like to travel on weekends and I’ve been there with all those and more!

I think the most laughable recently has been a rest area in Indiana on the way to my nieces’ graduation. My aunt and I were going into the ladies room. She pushed my chair in to the doorway. It was one of those walk in turn and immediate left and then another right to be in the actual rest room. My chair went in and the footrests hit the wall. The majority of the chair was still in the hallway. I couldn’t tell you what the handicap stall was like because there was no way I was getting into the actual bathroom. We ended up getting off the freeway at the next exit to use the facilities at a gas station.

I greatly prefer the more modern rest areas that have separate family/handicap stalls. Those stalls are wonderful for both purposes; family and handicap use.  If there is a family rest room available I use it. I figured that out at a St. Louis Cardinals game last year. When I asked where the ladies room was, the red-jacketed gentleman offered me use of the family/handicap bathroom. It may sound silly, but I’d never had a better bathroom experience at a baseball game before that! Note to anyone that hasn’t used them yet; the family and handicap rooms are actually designed to protect small kids and allow users of chairs or walkers a comfortable and safe bathroom stop. As a rule at an event or attraction, the first thing I do is locate the family/handicap bathroom so I know if and where it is.

But in the title I promised a perk. The family/handicap bathrooms are a plus and better than a supposed-to-be accessible stall. The perk is courtesy of the US National Parks!


On our recent vacation to the Outer Banks in North Carolina, we’d planned to visit the Wright Brothers museum and a few lighthouses. I wanted to proactively look into the accessibility of the different attractions. There are ramps to the monument at the Wright Brothers museum, but there are no ramps or elevators to get a wheelchair to the top of any of the lighthouses. Okay, if there had been a way to get to the top of a lighthouse in a wheelchair I’d have been shocked.  What I did discover is the Access Pass!

The Access Pass can be obtained if you have a permanent disability. The card can be obtained at any National Park or monument that is staffed. I got mine on the way in to The Wright Brothers Museum. The Access Pass allows me to visit National Parks and Federal Recreation Ares for free. That’s one personal vehicle in the park or the pass holder and up to 3 companions for single admissions. The wheelchair is not keeping me out of the National Parks, it’ making it easier to fill up my National Parks Passport with more stamps! We got our stamp for Cape Hatteras Lighthouse and I wheeled all over while David, my husband, climbed to the top.  I got lots of pictures, including of him sat the top. It wasn’t “easy-peasy.” At the end of the stop my arms were falling off! But it sure beats sitting at home looking at someone else’s photos!

Photo credit: Nani!


National Parks Access Pass FAQ