Showing posts with label oh wonderful technology. Show all posts

Being a 20something can no longer be considered "young." People like to tell me that I am "so young, you have a lifetime of opportunities ahead.." while this may be true in some aspects of my life, it is definitely not so in the areas of medicine and science.

Science happens faster than a blink of an eye. Right now, a scientist or 'lab geek' somewhere might be handling micro-organisms that will have an impact 1,000 times its actual size. The rate at which medical advancements happen can mean the difference between an early 20something in a wheelchair vs. a child of 7 or 8 who runs freely. Those two individuals were diagnosed with the same genetic condition, the same form of the condition, presented with similar fractures at birth, and yet because one was born ten years earlier she got the benefit of time and learning on her side. As I'm flicking through pictures on various O.I. groups on Facebook, there are hundreds of examples of what I just described. This is not the stuff of science fiction or made-up case studies that medical students pour over, it's real life!

Evidence of the enormous difference between ten years of science doesn't even need to be revealed between two people, I have proof of this right on my own body. In third grade I had my first rod operation on my right tibia; since I was still growing at the time my orthopedic surgeon inserted a K-wire along the bone. After the operation I had scar tissue along my front shin, the pale pinkish scar was like one of those garden vines that grow along fences - mine snaked along the path of my formerly bowed tibia. About ten years later I was graduating from college and had the procedure done on my left tibia. Except this time I was no longer growing. The surgeon inserted screws, a metal plate, and a rod into my left tibia - there were several osteotomies done and the operation took almost 5 or 6 hours. Despite all the hardware that went into my leg ten years later I was out of the hospital in two days. I resumed normal day-to-day life routines in about three days, and was out of the full leg cast in about three or four months.
The point is not how quickly I pleaded to get up and about again, but when my cast was taken off the scar tissue was barely noticeable. Not only that but it was straight - ramrod straight as if my surgeon had made the incision with a ruler. I'm sure he didn't actually use a ruler, but I was amazed at the difference between ten years on my legs. Precision, accuracy, healing time, managing other risks, and the cosmetic impact post-surgery seemed to have evolved right before my eyes!

If you were to ask me whether or not I'm envious of those young'uns who are running about now with O.I. type III, my answer is hell yes! Of course I am jealous of all that they are able to do and the childhood that they are able to experience because of their abilities! But I think that this is all a part of the cycle of life... or something of the sort. We are supposed to be getting older. Younger generations are supposed to be 'better' than us. I am just grateful that science is making improvements for others, that progress is being made for those who were told that we would never live past two. I guess I'll just have to accept all of that with some amount of grace and amused cynicism :-)

In the mean time I'll be practicing my 'grumpy old person' voice:"When I was your age I had to carry my x-ray files back to the doctor after the x-ray in a gigantic folder that weighed 40lbs! So quit the cryin' or I'll give ya something to really cry about!" 

This isn't the post that I was supposed to be writing today. This isn't the entry that is scheduled in my editorial calendar (a schedule of posts that I make at the beginning of each month). It's because today I am working with a handicap, a temporary handicap.

The handicap has made it so that what should have taken 30 seconds to type the above paragraph took at least two minutes.

And even as I write this sentence I realize how ridiculous I just sounded. Really Sandy? Shame on you, there are people struggling with worse and do not consider it the end of the world because it is taking longer.
I am extremely embarrassed. This morning the second I realized I'd be working with this handicap I marched my frustrations to a Facebook status! I harped on about how annoying it is that I need to deal with this today, and how irritating the results of the handicap are..  I reacted without thinking.

Broadly speaking a 'handicap' is something that makes success more difficult. But I'm not entering into a competition today, I'm not competing against anyone else, and aside from my usual low-key Tuesday schedule - there isn't anything specific that I need to bank my success on today. In other words, my perceptions of this extremely minor glitch was skewed by the fact that I'm the one competing against myself! 

So what's going on?? You're probably wondering. Here:
This morning I realized the "l" key, the key for the period, and the right arrow key decided to cease responding to the every beck and call of my finger tips on my keyboard. In my mind I had an image of myself copy-pasting every "l" and "." into all that I would have to write today -- and trust me, I write a lot. Then I quickly ran through all my possible solutions: Well I could use Dragon Speak, I could borrow a keyboard and plug it into the USB port, I could use the on-screen keyboard application...And then I calmed down a bit.

I'm the one who decided it would be frustrating to have to put-up with this today. I'm the one who decided to get frustrated because it would take a bit longer for me to get things done today. And I'm the one who decided that this is going to put undue burden on whatever 'success' I was supposed to have today.

But it doesn't need to be that way. I can take the time to work through this silly technological hiccup, I can also take this time to double and triple look-over the things that I write, and I can take the time to understand that a handicap is only perceived as such when we choose to think of it as one.

I'm no mechanic and can just barely name all the parts of my wheelchair, so I don't know about the inner workings or the deep dark secrets of elevators. However I have ridden in many to be able to confidently offer up a few truths about those boxy transports --

• No matter how frantically you push the button, it's not coming any faster. Seriously. I've tried tapping out "faster" in morse code and it hasn't worked. Just wait. And if it seems an uncomfortably long time has passed and you're still inside? Then open the "Emergency Call" compartment inside and follow the directions...and...well, may the elevator gods be on your side! 
• It is going to smell like people. All kinds of people. Sometimes it may smell like people in various stages of undress. People are awkward, so the smell is going to be awkward. These are the things I tell myself so that I don't need to fill in the blanks in too many specific details. 
• If there is a small child, let him or her push the button. Otherwise you will be glared at by both child and parent for the remainder of the 15 second ride. It's uncomfortable already, so do yourself a favor and forego the small joy of pushing the light-up button when there's a young'un in your presence. 
• Sometimes the entire box will come to a shuddering halt. Spell your entire first name backwards and forwards before deciding to push the emergency button. On your lucky days the doors will open before you've finished your name backwards. 
• Try to not touch the railings, or suspicious wet spots on the elevator floor.. y'know what? Just keep your hands to yourself unless you're pushing a button. If the elevator were a circular plate, it'd look like a giant petri dish festering with germs. 

American superstar Beyoncé recently gave birth to a daughter, Blue Ivy Carter. Among the reports of this new addition for Beyoncé and her husband Jay-Z is the 'over the top demands' they requested for the arrival of their first born, at the cost of a mere 1.3 million dollars... 
Since my orthopedic doctor has been seeing me since birth, my parents used to joke that I too get VIP service. I never wait in the waiting room and am able to directly page him when a fracture happens; rarely has he ever said that he won't be able to see me the same day a break happens. (It might be much later on in the day, after he has performed about 3 other operations on other O.I. patients..but it's always worth the wait).
So, what if I could have "swanky" hospital treatment at $1.3 million - what would I ask for?

1. A wave less waterbed that awaits me on the x-ray table. Instead of just lying on the hard and cold x-ray table, I would like the cover of the mattress to be silk covered - please and thank you. Wave less water beds are made up of water and air that can be set to personal preferences in terms of water to air ratio, and amount of wave reduction. Ideally something that takes the pressure off and is able to support fractures without me holding an injured area. Also, if a duplicate of that waterbed mattress could also be waiting for me in the cast room - that would be great too.

2. An iPad that is connected to the hospital network. These days you are able to send an 'electronic page' to doctors within the hospital network, and all of the x-rays are uploaded digitally into the hospital records. With an internally connected iPad I would be able to see the x-ray being uploaded in real time AND let my doctor know that I was done with the x-ray and will see him soon in the cast room.

3. Designer cast fashions. How awesome would it be if I could have a Ralph Lauren Polo cast design? Complete, of course, with the signature polo emblem printed on the cast. Or maybe the classic Paul Frank monkey face? Or even better, to have my favorite Vera Bradley pattern cover a broken arm? (In case you're wondering, it's java blue..) All casts would be waterproof of course.

4. A security guard. He'll mostly be for eye candy purposes but also block younger patients from accidentally bumping, running, hopping, skipping, or crawling onto me. Oh, and he'll warn off the hospital clowns...

5. On demand supply of green jell-o. Because I like green jell-o and I know the hospital has endless amounts of it. And cherry popsicles too, please and thank you. Hold the ginger ale because I know the hospital makes killer milk shakes. STAT!

6. Personal wheelchair and wheelchair pusher. Sometimes if I have a broken arm or leg it makes sitting up in my regular chair difficult or just impossible. It would be nice to have a gel-seat cushion manual wheelchair waiting for me at the hospital, and a charming conversational wheelchair pusher (personally interviewed by me first) to keep me company as well.

7. Oxygen bar in my recovery room. Because why not? Let's make that oxygen mask more fun! Dude seriously -- could you imagine this experience while on codeine and morphine? Maybe I'd be able to discover the solution to the healthcare problem in this country!

8. On Demand cable or Netflix hook-up in my post-surgery room. There's only so much day time television a person on morphine and codeine can handle. Well, I'm just sayin'... What about a shelf of the top 10 NYTimes best sellers? Or the top rack of the gossip magazines in grocery store check out lines? Or an iTunes gift card so that I can download all the addicting app games on that iPad? How much money do I have left at this point? Heck -- let's just get'em all!

... Okay, okay, I've had my fun of day-dreaming. As you can see there are probably a million other things that I could dream-up that would make my hospital stays and appointments more comfortable. But the point is that unlike Beyoncé, I have figured out what I NEED to get better. 80% of that knowledge is from personal life experiences, and the other 20% comes from a mixture of trusting my doctors and their own knowledge. The next time you are at a crossroads of decisions with your doctors, think about the fine lines that differ between: medical need, requirements, and wants! 

The winter of 2009 was an exciting time for me. It was senior year of college. More specifically the LAST semester of college! I couldn't wait to graduate, to get started on "real life", to take advantage of the opportunities that were waiting for me, to finally.. START!

Maybe it was around the time I started jumping, skipping, and running in my walker that my physical therapist decided to switch to crutches. Mind you it wasn't the kind of crutches that dig a deeper pit beneath your arms but the kind you slip your wrists through, and then grip. I'd had my red walker since I was in Kindergarten till the fifth grade, and very rarely did the arm rests need adjusting (maybe once every 3-4 years?). My red walker was like my own mini-fort of safety, confidence, and independence. There were four prongs, the front two were wheels and the rear prongs had rubber stoppers. There was a front piece to it that served to connect everything together, and in my mind also served to stop me from falling over or from otherwise getting hurt. I used to turn around and sit on that front piece (even though it wasn't really a seat, and even though my P.T. said it wasn't safe). I could put my entire weight on that walker! I was able to lift it just enough off the ground to be able to turn corners, or even do a full 360 turn-around. Suffice to say I felt safe in that walker, it was with that piece of equipment that I learned to take my first independent steps in.
So when all of the safety, comfort, and security was stripped away from me I got nervous. Immediately the first thing I noticed while wobbling in my crutches was: there is nothing in front of me. My face could see the immediate floor in front of me. I then noticed how much of my weight I had distributed throughout my forearms with the walker. In crutches all of my weight seemed to be leaning on to two metal extensions, resting on rubber stoppers that were never completely flat on the ground - but instead always at an odd tilt, this made me nervous. What if it slipped? All I could see in my head was the replay of me face planting onto the pavement, crutches flying with arms and legs pointed in every which direction - kind of like a cartoon dog slipping about on ice skates.What if I forgot which I was supposed to move first - my leg or my arm? With the walker everything seemed so basic, so intuitive, it seemed like I had to relearn and reteach my body how to walk again. Had I really taken steps towards my independence? Or was I now just re-inventing the wheel?

"Okay, so which do you want to use today?" My middle school physical therapist had both my red walker and my new silver crutches in front of me. Without hesitation I pointed at my red walker.
"Well let's do some walking with your crutches first okay? And then we can play soccer in your walker, does that sound good?" 
"Fiiiine-uhhh" I grumbled.
Slowly and with a lot of patience from my physical therapist my body became used to the crutches. I found that I was able to stand with a lot more ease, move quicker, and suddenly my movement seemed to flow a lot more naturally. I was no longer pushing and jerking myself forward. Everything seemed so intuitive after a few weeks: I knew just how much to put my crutch forward without over-extending myself, I could match where my foot stepped to with where my crutch was, I understood the cross-rotating pattern of left-right-left-right-crutch-foot-crutch-foot. The weight on the palm of my hands where I gripped loosened over time, I was no longer as nervous, I was no longer scared of my new boundary-less independence.

It became clear to me that I became comfortable in my crutches when I used them on my own, at home. I knew that I preferred my crutches when I chose them over my walker when my physical therapist asked. And most of all my crutches soon became a natural part of my school day when I felt comfortable enough to walk with them around my friends at school. I was no longer limiting my use of the crutches when everyone else was in study hall and the pathways were safe for me to exercise in. I'd use them to go to lunch, I used them during P.E. class, and sometimes during the day when I was tired of sitting in my wheelchair.

The decision to switch from a walker to crutches reminded me of how resilient my body is despite its genetic fragility. It still shocks me how adaptable we are and how with practice even the most challenging and daunting experiences can become second nature to all of us.

Most of my friends now live in apartments in the city. This is a pretty boring observation given that many of us are now in our mid-20's and we're "at that age" where apartment living is an assumed norm. But I should add that most of my friends also do not use wheelchairs so apartments have a tendency to be less than wheelchair-friendly. Recently I was invited to two Halloween parties, both of which take place in living arrangements that are up at least a few flights of stairs and as one of my friend's put it "it's not the most Sandy-friendly set-up.." 

As I'm sure most of you have probably heard by now (maybe on a device he invented no less), yesterday we lost Steve Jobs, Apple Co-Founder, CEO, and Chairman. Since I'm a gadgety and techy person of course I always stayed up-to-date with Apple's latest rumors and innovations; I was always fascinated by how much of Apple's technology strove to be more accessible -- to everyone, with or without a disability. 

Throughout that particular day the neon lights on my control panel dwindled. I watched as each rectangular block of battery seemed to evaporate into thin air, poof and then it became black, like it never existed to begin with. But there was too much going on! I had about 3 classes back to back that day, student club meetings, friends who wanted to meet up for lunch and then dinner, errands to run, cleaning to do etc. By the time the neon blocks were glowing a sallow yellow and then a dangerous orange, I still hadn't even gotten through half the things I had to get done for the day. Each tick of the battery indicators blew out before I could get enough done, like candles on a birthday cake before the wish had been made.

A responsible person would probably have their wheelchair charger on hand at all times. A more efficient chair (as opposed to the one I have) would probably have a secure place to keep the wheelchair charger.
But of course I am neither responsible and nor do I own a more efficient chair. So what was I to do?
I couldn't exactly drive back the seven blocks back to my dorm room to go plug in my chair. That would not only require STOPPING MY DAILY ROUTINE for some MACHINE (ugh, how annoying and self-defeating would that be?!), but the travel back to my dorm room would just waste more battery bars.
My other option was to have a friend get my wheelchair charger for me, and also have them bring over my manual wheelchair to use while I left my power wheelchair to charge. But that would only forfeit my independence, hassle someone else, and I just wouldn't feel at ease to do everything I wanted to do.

As I thought about my options I was still going about my day, playing chicken with the diminishing battery bars. When it gets down to it I am too stubborn of a person to let some machine dictate or stop my life. There seems to be so many other uncontrollable factors that impact my day-to-day decisions that when it comes to the things that I can try to control, I will give it my all! Besides, my power wheelchair serves to liberate and make my life easier and more accessible. Everything from the electric powered joystick to the seat's ability to elevate, the purpose of the chair isn't to hinder and complicate my life but to improve and make it better. So if that's what it is supposed to do, then dang it that is what I will make it do till its last dying breath!

But as the day went on my battery power started its bold red and silent glare. I told my friends that I might not be able to stay out as late with them,
"Sandy we'll just switch the gears to manual and push you!" 
As kind of a suggestion as that was, my friends probably didn't realize that pushing a power wheelchair is NOTHING like pushing a manual wheelchair. Even if the motor is disconnected and the gears are turned to "free wheel" - the lug of a machine still weighs a ridiculous amount! Needless to say I wasn't going to put them through that, besides there is something incredibly annoying about being pushed in a power wheelchair that irks me more than people pushing me in my manual wheelchair. There is something about sitting on top of a dead motor as you are being pushed that highlights the helplessness of the situation.

It occurred to me that I didn't have to let the wheelchair's rapidly vanishing battery power stop or completely derail my day. I only had to manage my time, priorities, and travel distances better. At the end of that day, I was slightly shocked at how subtly having O.I. or being in a wheelchair can show me how to live a better life -- one that shows me how to make the most of everything, even if it's by literally slowing me down.

At this point I just laugh to myself whenever I see the ridiculous set-up of most public bathrooms. Grab bars are angled funny and about 5ft away from...anything. And the toilet paper dispenser is either 2ft above my head or 3ft away from the toilet! Since disabilities vary so much I can see the challenge presented when building a "standard" accessible bathroom (or standard accessible anything for that matter); actually, when you really think about it, it is pretty much impossible. Today I am wanted to write about how I navigate inaccessible accessibility - not just public structures but the day-to-day living necessities:

It could be to your friend, flight attendant, bus driver, or even a family member - but we've all done it, and done it MANY times: Explain how to fold the wheelchair. I have had manual wheelchairs that stay rigid and don't fold, wheelchairs that fold, and have even seen electric wheelchairs that collapse. It's a part of our lives and while we do it as automatically as someone else ties their shoes, to explain it to someone else can sometimes require the patience when teaching a 5 year old how to tie shoes for the first time.

This post won't go over specific details of how to collapse any wheelchair but instead give tips on giving directions to otherwise "clueless" folks who might not know the handlebars from the brakes.

Giving directions for medical equipment:

• A few times I have been out with friends and needed a ride home late in the evening. Giving directions to someone who hasn't folded a wheelchair before, and never mind in the dark, can be quite the hassle. If this happens it might help to turn on all the lights on in the car and try to position the wheelchair as close to the passenger seat as possible so that everyone can see what they are doing!
• Be patient. The individual is probably nervous about making sure s/he doesn't break anything and is probably aware of how expensive the piece of equipment is. 
• Think about it from their perspective! Imagine you are the one standing over the wheelchair and tell the directions from that point of view "so to your left there will be a switch that kind of looks like a fishing hook..." as opposed to "look for the switch, it's somewhere no the left."
• I have always found it helpful that my friends and family first make sure the seat belt is untangled from the wheelchair frame. Safety is key and should always be your first consideration!
• Take into consideration the size of the car or trunk that the wheelchair will be placed in. If necessary, do some planning in advance. Sometimes I have needed to take the foot pedals off of my wheelchair or with other trunks the tires have had to be popped off. 
• Don't use language from the instructions manual. Not everyone may understand the jargon from a manual so use language that is easily accessible and quickly understood - especially if you are writing directions for a flight attendant. Words like "seat is velcro and can be detached" as opposed to "remove adhesive from seat to collapse frame." 
• After you are placed into the wheelchair make sure everything "feels" right. It's important that wheels are not suddenly loose, or that the seat isn't securely fastened in. If something seems awry just calmly help the person figure out what seems to be amiss, but do so from a safe place! Fixing a loose tire while you're in the chair might not be the greatest idea. 

Of the many ridiculously random skills that I have, one my friends enjoy is my knack for turning everyday events into an adventure. They might think they're just bringing Sandy along for the conversation when they're going to buy errands, but little do they know that instead they'll take a trip down the cargo elevator and then trek across what seems like a snowy Alaskan tundra to go back to the dorms. Whether it's getting stuck in a snowbank, looking for appropriate curb cuts, finding accessible entrances, or getting wheelchair lifts to work - what should be a simple mundane task always manages to become some humorously awkward hoopla.

"Sandy the school spends like thousands of dollars to get this accessible equipment and then you don't use it. Could you please just... use it?" Asked the staff member behind me as we exited the brick building. I pushed ahead on my joystick, instinctively timed the roll so that I could lift my hands up, push against the doors with both palms, and fling it open just in time to return my wrist to the joystick and seamlessly roll through.
"But the automatic button makes the doors open so slowly! I'd rather just do it myself." The staff person had pushed the handicap button anyway and I could hear the low hum of the automatic doors being held open, you know, just in case someone might take 12 hours to exit; at that point I was already up the ramp and on the sidewalk half way to the dining hall.
I rarely use any accessible equipment. This includes trays that are supposed to be on my wheelchair, any arm or headrests are quickly taken off, and most useless to me is the grab bar in all accessible bathroom stalls. Sometimes when the toilet roll is 500 ft away from me I twist a bit of toilet paper onto the grab bar before getting onto the seat, but otherwise there is never any 'grabbing' of the grab bar on my part. Always I recognize what's there but I enjoy the challenge of NOT using what's there and figuring it out "on my own." Once in awhile though such 'challenges' have literally gotten me stuck, here's one such incident:

Just a note: In Boston the public transportation is called the "T" or the subway. 


I firmly believe that public transportation anywhere, for anyone in a wheelchair, is just a convoluted maze. The mess of outbound, inbound, express trains, elevators to underpasses, elevators to mezzanine, elevators to street level, broken elevators, shuttle buses and special stop subways get me frantically confused. Usually I feel like I'm a mouse running around an underground maze in an experiment for humans when I use the T. So that afternoon was no different.
My disability T pass was ready in hand and, like usual, I went to go tap my card on the accessible gate. I tapped and immediately the embarrassingly awkward "error" noise blurted from the machine. I read the error message on the gate screen: THIS GATE IS NOT IN FUNCTION. PLEASE SEE ATTENDANT FOR ASSISTANCE. As usual, the little booth where a T personnel should be sitting in was empty. I waited a few minutes and still no one came down the stairs. Looking around I spotted an Emergency Box with a red button; I didn't think my situation would be considered an emergency but there was no one else around. So I let out a hesitant sigh and pushed it. Candy wrapper noise came through, and then a few squeaks and some other garbled static. I thought it was probably all the ghosts of the rodents who lost their sorry lives in between the tracks trying to communicate with me; a minute passed and still there was no human voice. Exasperated and not wanting to be late for my meeting I reached THAT point.

"Alright, screw this, I'm just gonna go through the regular gate."
I went to tap my card on the non-accessible gate and it slid open. Unlike most power wheelchairs mine is fairly compact and small; it can turn on a dime and had gotten through some tight corners and entrances before. I trusted that my Silver Bullet wouldn't let me down this time. My wheels slid through the first 5 inches of the gate and then I was stuck. Not just stuck, I was wedged in. As I tried to move the joystick forward or back I could hear the squeaking of my rubber tires against the metal, it was like putting a cork back into the wine bottle - as snug as could be. I began using my arms to push against the sides of the metal gates while using my elbow to guide the joystick through but it was a no-go. I began rocking back and forth in my seat, slamming my back into the seat in hopes of getting something to budge. Finally, after a few intense moments where I flirted with whiplash I was set free. By then a few others had come down to the platform and pretended to not notice my awkward predicament. Quickly I wheeled around, headed towards the elevator to the street level and sped towards the next nearest subway station.

Accessibility Suggestions:

• I've come to understand that it's true, in most situations, the accessible equipment isn't exactly set to an appropriate size for someone with O.I. But, as I should have in the above situation, assess carefully and don't completely undermine the logic of all public accessibility equipment. 
• It's important to not "what if..." your life away and to be constantly thinking about "what if this happens.." or "what if that happens..." it's better to have some idea of solutions that might work in more common situations. I.e. who to contact if an elevator is broken, or can you call a friend look up the information for you? What happens if you are injured on the train? What happens if your wheelchair malfunctions? 
• If you are someone who is older and more experienced with public accessibility, you will probably come to find that many employees aren't sure how to work accessible equipment themselves. Though this can be frustrating it might not always be their fault (maybe someone didn't train them?!). So if you do know how the equipment works guide them through the process, and help them figure it out with you.
• There are countless places that say they are accessible but, well, may have missed the mark a bit. In some instances the issue might be age of the building, it's a historical site, or budget problems. Whatever is preventing the problem, be sure to let the building managers (or other staff member) know you realize it but it is still "disappointing" or "unfortunate.." Expressing your dissatisfaction in a constructive manner is important to let others in the community know that this cannot be ignored.
• When elevators break, or "regular" public entrance seems impossible - never underestimate the power of the loading dock at a store, mall, or other large gathering area. 

That's me, riding on the back of a jet ski on Lake Mousam in Maine.

• Get a medical bracelet that says Osteogenesis Imperfecta “brittle bones” disease on it
• If you’re flying, call the airline in advance to make sure that your wheelchair or other medical devices fit their requirements. (Airlines have alley chairs to transport disabled people to and from the seat to the gate).
• One of the best ways for people with OI to exercise is by swimming! Water parks, hotels with pools, amusement parks with water rides, and beaches can be enjoyed by everyone in the family. (Ask your doctor about water proof casts in the case that you have a fracture).
• It’s safest to take your most reliable wheelchair to travels. Experiencing wheelchair malfunctions or breakdowns can be risky when you are far from home and or your health care provider.
• If necessary, call the hotel/motel and ask about accessible bathrooms and poolside assistance