disabled

Accessibility

Recently, we drove to Dallas & I used my portable external catheter (from Purewick – I’m sharing this so other stroke survivors know about this, because it has been a game changer for me).  Sitting on it, initially, is not the most comfortable thing, but IT’S SO WORTH IT because I gain so much freedom & lose so much anxiety!  There’s a lot I put up with now that I never thought I would, because it makes my life better.  Happier.

Last month my grandson invited Mark & I to his swim lesson. When my DIL told James she’d ask if we were busy, he said “Grandma is not busy for me. She’s alright”. I was surprised by his answer. Usually if Mark can’t drive me, I can’t go.  But when I do go, Mark does well finding places I can go (thank u also to ADA).

Then I realized there are times at home when Mark’s working, but I can still play. At home, I can always be there for him. I hope he feels the same way when he grows up & I can’t go to everything…case in point:

A while ago my friend/helper Angie invited me to watch her son play soccer. I hesitated to say yes, because I needed a ride, & I needed to consider my schedule (I can’t usually use the bathroom when I’m out, so I have to factor in if to see my schedule allows me to use the potty at home before I leave,)

I forgot everything else I need to do though (if I what to go somewhere new) because Mark usually takes care of it  – & I’m so grateful he does,  because sometimes I’d rather stay home than figure it all out (things like checking out the parking situation, see if i can even get in, see if a stadium has cement I can roll on to an accessible seating area, or if it’s a home, I need to contact the family to find out I need a ramp & if I can even access a door…). I’ve always been a homebody, but the longer I’m disabled the more I’ve become even more of a homebody because going anywhere unfamiliar is exhausting! I can’t just go!  I hate it & usually avoid going to unfamiliar homes because it’s just too much work!

It wasn’t until I talked to Angie the next day that I was reminded how I missed many of my kids’ games & activities just because it was too risky to take me to an unfamiliar stadium or building. I grew up in a family where we supported each other in everything, & it broke my heart to hear my kids ask, “is mom coming?” as they walked out the door, because I wanted to go, but it wasn’t feasible!  How I miss the days when I could leave the house without a second thought of if I could get in & if I could use a bathroom (personal note: I am SO grateful to those who take care of this – like my SIL & daughter who recently opened a business in Utah, “Sunny’s Luxury Suites: dog boarding & daycare” – click on the words to see their website)

Even if a place is accessible, there’s no guarantee I can use it. People love to occupy the single stall bathroom, the bigger dressing room, the closer parking, etc. I try not to judge, knowing that even disabled people have more than 1 friend (I have a pet peeve that I can usually only sit by 1 person, & I also know not all disabilities are visual). However, many times, even if there IS a bathroom Ì can use, I oftenwait 20 minutes  to see a single, very healthy guy walk out of a stinky bathroom – I have to use it after some guy was  in there alone so he could poop alone, or some able-bodied person just wanted to use the nearest toilet…Arg!

Another “favorite” is particularly popular bad on  cruises: the elevator wiłl open the doors & it’s often filled with healthy able-bodied teens who could easily walk up a flight of stairs but rather the walk a flight of stairs, but even after seeing me & several other wheelchairs waiting, they stay on the elevator & make us keep waiting.

& even though u can ask for an accessible hotel room, there are no guarantees u will get it!  (I don’t know what other people do who don’t have a husband who can carry them! I think the Lord  helps somehow because I have seen Mark do stuff I can only guess the Lord was behind it!)

& my personal “favorite”: Handicap parking.  Handicap parking is THE WORST – & I don’t know who is worse … able-bodied people, or disabled people!  Those hash marks are not decoration, but BOTH able-bodied AND those who can legally park there will park on the hash marks!  & just because u can legally park there doesn’t mean u should!  I can’t tell u how many times we parked in the back of the parking lot so no cars would block my ramp, or I waited in the rain, so my husband could back up enough to let me in!  If u don’t need the curb cuts (like wheelchairs do) & can walk, then don’t fill up the van handicap parking! & if u aren’t disabled NEVER EVER park in ANY handicap parking, even if u think u will “just be a minute” or have a sign from a friend/family member that makes it legal. That minute could be when someone comes & needs it, or if all the van spots are filled up, u could be taking a spot from someone like me who needs access to those nearby curb cuts.

I’ll get off my soapbox now…I can’t say I was perfect (then, or even now) & I can’t say I have never done any of these things. There’s a serious lack of education about this stuff. I was clueless about how my actions affected people in the disabled community until I was in it, & if I ever hurt anyone, I hope they can forgive me. Dear reader, especially if u aren’t disabled, I hope your eyes are opened.

“What are your thoughts about traveling?  We have heard horror stories about broken wheelchairs, etc. I wanted to ask you because you guys travel.”

“Traveling is my way of not letting a disability control our lives. Overcoming obstacles feels like an improvement in health- even if nothing actually changes with physical health. It is a mental win.” 

–Mark

Traveling is mentally, physically, & emotionally draining, yet it can also feel like a huge win because YOU “won,” not the disability!

My #1 advice: DO NOT take the heavy wheelchair u use at home.  Get a lightweight, collapsible one that has a removable lithium battery. Don’t underestimate how important your travel chair is: it has the power to increase/decrease anxiety & change your perspective on your trip!

I know this from experience.  I dreaded my old travel wheelchair, & traveling has been tough for me. In the past, travel has meant a severe downgrade in my lifestyle.  Not only did I lose much of the independence I had worked so hard for, but I also had to find ways to still do a little bit of therapy & my chair (which is a part of me now) wasn’t very comfortable, it didn’t have many of the features I enjoy, was wobbly, & harder to drive. 

At first, I was in a manual wheelchair – that was a nightmare since I only have 1 working arm, so I could only move in circles!  I upgraded to these collapsible chairs that can be either power or manual.  It is frustrating to be left in manual mode somewhere (since these chairs have little wheels), but I was so happy that I could move that I tolerated that how wobbly it was, how difficult it was to drive, how it had manual recline, etc. 

But I just got a new travel wheelchair: Majestic IQ-9000 from Comfy-Go Mobility.  I can’t tell u yet how future trips will go, but I can tell u that for the first time, I’m excited to use my chair, & I felt my anxiety decrease when my new travel w/c arrived: It isn’t wobbly, drives smoother than any other chair I have used (it starts/stops smoothly – if Mark is driving me with power on & suddenly stops, I don’t get knocked around), & it has a remote (which may not be a big deal, & may mean something else to Mark, but to me, the remote means that after 20 years, Mark & I can finally hold hands as we “walk”!)  I cried (with happiness) when I realized this!    My chair also has a lock feature that every wheelchair needs (so kids can turn it on & off, & play with the joystick, but can’t move the chair). This wheelchair has power recline, a “real” horn, & it makes a beeping noise as I back up. (Kinda a cool safety feature cuz people are warned, but we figured out how to turn it off – thank u, YouTube – so I could use it in a quiet place, like a church!) 

I have a bag I like my chair to be put into (then they put it below with strollers & luggage), though there is a closet by the airplane door, & they are required by law to put a wheelchair in the closet, if a wheelchair is not there already.

At our destination:

– I’m fortunate because my husband can lift me, so we don’t need a w/c van or lift, but those can be rented. 

-We always ask for an accessible room with a roll-in shower, though it’s never guaranteed (even when u book one).  They usually have shower chairs or something u can sit on.

-The big thing is to be creative in finding solutions for whatever doesn’t work out – another way I’m fortunate is because my husband has had creative solutions, like a black sock stretched over a ripping armrest, & a wood ball from a craft store in place of a missing joystick!  As Mark puts it, “There are always possible problems. We have had repairable damage to chairs, but most has been fixed after a quick trip to a hardware store or by using tools or emergency parts kits that I have started bringing after a few minor incidents (the kit has things like an Alan Wrench, industrial strength Velcro).”

“The unknown is scary, but it becomes comfortable with practice.“ (Mark)  For more support, u can join something like “Accessible Travel Club” on Facebook.

From the perspective of a caregiver (with an additional focus on international travel):

There are more options than most people realize. There is an entire travel industry around disability travel. There are people in other countries who do all the planning and work if you need it. Cruises are excellent because it feels like staying in a U.S. hotel with daily visits in foreign countries where you do not need to worry about what accessibility is available.  (While) you can never be guaranteed accessible rooms at hotels, you are guaranteed a specific accessible stateroom on a cruise ship where you can plan on things such as left or right-hand handrails near the toilet or in the shower. You just need to book early for cruises to ensure that a limited quantity of staterooms and excursions are available. 

In many ways, many countries outside of the U.S. are more accommodating than our own country. Foreign countries often fast-track wheelchairs through airports and customs. Some countries often do not charge the caregiver at some venues. There is a guilty pleasure when a foreign guide or venue employee goes crazy on someone who should not be using accessible facilities. It typically requires a bit of planning and a few calls or emails to figure things out. We use Sage Travel in Europe since they have trusted guides who understand accessibility. They also act as resources for finding accessibility supplies if needed. They often arrange accessible cruises and trips where applicable excursions and hotels are arranged. I am jealous of some foreign disability toilets where they can have adult changing tables and lifts installed. 

We do not bring the heavy chair with all the bells and whistles. We have a smaller and collapsible travel chair. It is not as comfortable, but it allows for more travel options. Tropical locations (most islands) are difficult to visit. Even if there are cuts in curbs in the towns, most buildings near a beach are on stilts due to hurricane season precautions. 

It helps that I am strong and pretty handy with fixing things. On a few occasions, I have had to carry my spouse over small steps or on full flights of stairs. I know how to fix things and can solve problems really well. AirBnB’s are notorious for over promising. Be prepared to find a shower stool or some adaption that you need for specific needs. If you can find a good business class flight you can get fully reclining seats on long haul flights. Just because it is a first or business-class flight, it does not mean every leg will have all the perks. You can ensure what you need if you carefully vet an itinerary. Business class flights also give access to lounges, which make distance travel much easier. Of course, not everyone can fly business class every time. If when we have flown business class, airplane bathrooms are tiny. We have made it work but I have friends who use a blanket and cath at their seat. A good support team of family or friends is super handy and required in some situations. 

Overall, international travel can be better than domestic travel. London is a great place to experiment with. We are lucky to have a direct flight from Austin. Prior to the pandemic, it was pretty cheap to fly to London on a direct 9 hour flight. You can take a train to Paris from London in a little over 2 hours. A 3 hour flight from London will put you on most cruises in Europe.