Archive for ‘Disability’ Category

Posted on: July 17th, 2023 by Julie Bestry | 16 Comments

The following anecdote from inspirational teacher, speaker, and author John Perricone has been making the rounds on the web:

Several years ago, I invited a Buddhist monk to speak to my senior elective class, and quite interestingly, as he entered the room, he didn’t say a word. (That caught everyone’s attention). He just walked to the board and wrote this:

“EVERYONE WANTS TO SAVE THE WORLD, BUT NO ONE WANTS TO HELP MOM DO THE DISHES.”

We all laughed. But then he went on to say this to my students: “Statistically, it’s highly unlikely that any of you will ever have the opportunity to run into a burning orphanage and rescue an infant. But, in the smallest gesture of kindness — a warm smile, holding the door for the person behind you, shoveling the driveway of the elderly person next door — you have committed an act of immeasurable profundity, because to each of us, our life is our universe.”

This is my hope for you for the New Year, that by your smallest acts of kindness, you will save another’s world.

Recently, I’ve had small acts of kindness on my mind. Some friends, both near and far, have been going through difficult times, and it has had me thinking about what I can do for them, especially when I’m not close enough to help do the dishes.

Dishwashing Photo by Pavel Danilyuk

Most of the time, our goal in getting organized it to make our lives easier and prevent unfortunate things from happening. However, sometimes, through nobody’s fault, bad things happen. People get sick or injured, or family member die, or people just go through dark times, and no matter how organized they were (or we were on their behalf), life gets upended.

When that happens, when a family member or friend is in bad shape and everyone has to pull together to help take care of that individual or their family, organization is the key to making everything a little less chaotic

In today’s post, we’re going to look at some strategies and resources for helping when someone you know is sick or injured or recovering, and they or their household could use a little support.

ASSESS THE SITUATION

We can’t presume to know what someone else needs, even if we’ve been in the same situation, or even if we’ve helped that same person before.

An organizing client recently told me that she and her husband had needed little assistance after the birth of their first child, but experienced profound difficulties after their second was born prematurely. She was in the hospital for an extended ime, and the baby was in the NICU for months after that.

After the first birth, she needed only a little errand-running and someone to sit with the baby so she could shower or nap. After the second, she and her husband felt exhausted and overwhelmed, and needed support for everything from meals and childcare to housekeeping and someone to check if they’d paid the bills.

Most people will welcome some assistance, while others struggle with the idea of letting well-intentioned others make arrangements. So, talk to them or their caregiver to get a sense of what kind of support they will need, want, and accept. Common categories of assistance might include:

  • Grocery shopping — Depending on the individual’s or family’s preference, you may perform a weekly inventory and create a shopping list to share with others helping to cook, or you might help the family set-up and learn how to use online grocery shopping apps and arrange for delivery by someone in the support network.
  • Cooking — Whether you’re helping with meal preparation in the home, or cooking at your house and delivering, ensure that everyone’s dietary preferences and restrictions are considered. It does nobody any good to have a freezer full of pasta-based casseroles if someone has a gluten sensitivity. (As much as everyone is environmentally conscious, this is one time when using disposable containers to lessen inconvenience should be considered.)  
  • Cleaning — When you don’t feel well, messy or dirty surroundings will make everything worse. Imagine the relief of a clean bathroom and a tidy kitchen for someone spending most of their time at home or in medical settings.
  • Childcare and transportation to/from school and extracurriculars — This might be a good fit for friends who are parents of the children’s classmates, but don’t forget to invite  “aunties” and “uncles,” relatives or not. When things are stressful at home, whether there’s an illness or a new baby, getting a special day out with grownup who isn’t a parent or grandparent can make a child feel valued and like a VIP. 
  • Errand-running — Having someone who can dependably pick up prescriptions or make store returns ensures that the household can still run (somewhat) smoothly without daily stressors.
  • Pet care — Fido and Fluffy may not be able to talk about their feelings, but you know they sense that something is going on. Some people in the support network might limit their efforts to feeding and cleaning up after pets, while others might be up for taking pets on an adventure to the dog park or the groomer.

Toddler Walking Dog by Robert Eklund on Unsplash

  • Transportation to medical appointments — Imagine how uplifting it would be have a trusted friend take you to your appointments and feel, even for a little while, like the company you’re keeping with them is just a normal excursion!
  • Serving as a scribe during medical appointments — Being ill is stressful, and it’s hard to focus when you’re not feeling physically and/or mentally at your best. Having a trusted, confidential friend available to take notes, and maybe even to ask questions if you see they’re looking confused, could be a huge comfort. (It’s a plus if the person has any medical background, like a retired nurse or PA, but in a pinch, you’d be surprised how much someone picks up watching two decades of Grey’s Anatomy.)
  • Acting as entertaining/distracting company during chemo or other treatments, and during convalescence. Again, whatever someone can do to make a moment or an hour feel “normal” might be a blessing.
  • Emotional support, both for the person and their caregiver(s) — This is an especially good category for loved ones who live at a distance. Having someone in the Pacific Time Zone who’s awake and able to offer a shoulder when everyone in your time zone is asleep gives patients (and their families) the chance get what they need without feeling burdensome. Encourage people who can’t participate in more formal support schedules or visit in person to be there however they can, even if that’s a card or a texted meme. 

Read about others way to help.

How to Help Someone Who is Sick (An impressive list from the Kansas Health System)

How Not to Help a Friend in Need (New York Times)

50 Thoughtful Gift Ideas & Gestures for a Friend in Need (PrettyWellness.com)

Do not just ask, “What can I do?”

This puts the onus on someone whose mental reserves are already taxed to try to conceptualize what they need and try to feel comfortable asking for a favor. Instead, your goal is to to say, “Here are the things we’ve thought of. What are you comfortable letting us do? Is there anything we’ve forgotten that we could add to the list?”

CREATE A SUPPORT NETWORK

Even if you’re the sibling, the in-law, or the best friend, you can’t do it alone. If someone you love is going through any kind of illness, treatment, or recovery, or is otherwise in a difficult position (for example, is in grief or suffering depression), you can’t be the magic wand that solves all the problems. What you can be is a project manager so that, together, you can all maneuver that wand to make a little comforting magic.

Gather your community.

With the permission of your loved one and/or their partner or caregiver, reach out to friends, family members, neighbors, and colleagues to see who is willing and able to help. Use social media, email, texts, or phone calls to inform people what you’re trying to do and why, and ask for their support.

Make clear that you’d much rather someone take on a smaller role and be able to contribute than to take on too much and not be able to provide what’s promised when the time comes. 

Don’t presume that everyone is equally skilled and comfortable with all tasks. Provide a list of the tasksto be completed, and ask individuals to state where and when they’re able to help. People who love to cook will find it easy to “make double” when preparing meals, while those with flexible schedules and a love of kids will probably be eager to play taxi from school to ballet or soccer and then home.

Coordinate a schedule.

Once you have a group of people who are ready to help, you’ll want to establish a schedule that ensures the person you’re supporting receives consistent help without overwhelming any one individual.

This may involve setting up rotating shifts for different categories of tasks or assigning specific days to different people. Some in the network will have a great deal of flexibility while others can only help on weekends or evenings. Meet people where they are.

Communicate clearly.

Once everyone is on-board with providing support, select a method to ensure clear and open communication.

Rotary Phone by Sam Loyd on Unsplash

Different people (and definitely different generations) have decidedly varying communications preferences. Boomers and retirees might not mind phone calls, while GenZ and Millennials (and folks with jobs that require a lot of intense focus) are more likely to prefer texting or emails, so they can reply at their convenience. Create a master list with everyone’s name, phone number, email number, and preferred contact method, and if everyone is amenable, share it as a spreadsheet in Google Drive or a note in Evernote. 

Sometimes, you’ll want to communicate with the entire group rather than individuals, and email might work best. There are also online platforms (as we’ll discuss below) to help develop support calendars, allowing individuals to sign up for the tasks and times that work best for them.

Communicate with the person/family, too. If people are going to be showing up to drop off food, make sure they know the schedule, and get the OK for how things get delivered or accomplished. They may prefer that nobody come to the house before 10 a.m., or that meal deliveries come to the side/back door (which may be easier for a recovering person to access), or that they get a text ten minutes in advance of anyone showing up.

Remember the importance of privacy and confidentiality.

I can tell you from first-hand experience that being a patient, whether for an acute condition or a chronic one, means having to give up far too much privacy and dignity. Remind and encourage everyone involved to respect the individual’s confidentiality. Someone may feel great about having delivered three days of meals to the family and want to share that warm fuzzy on social media, but nobody’s humblebrag should come at the expense of another person’s privacy.

Of course, it should go without saying that only the individual you’re supporting (or, if applicable, the family) should be sharing medical updates (unless a proxy is asked to do so).

Consider crowdsourcing professional support.

Depending on the individual’s needs, the support community may want to provide funds to help accomplish professional work when the individual in crisis is unable to perform their usual tasks. Help might include a professional organizer for household functionality, a daily money manager to keep up with finances, or an academic tutor for the children.

Your network might want to gift the individual in-home massages or salon services (manicures, hair/scalp care, skin care, etc.) to boost their spirits and support their physical well-being.

Embrace flexibility.

As you likely know, health conditions can be unpredictable and do not abide by the calendar. Be prepared to adapt and reconfigure the support schedules as needs change. 

USE SUPPORT RESOURCES THAT ALREADY EXIST

There’s no need to reinvent the wheel. Take advantage of resources that can complement the efforts you’re already making.

Meal and Support Scheduling Platforms

Caring Bridge — One of the best-known platforms of its kind, Caring Bridge exists to help provide updates during a health crisis. It’s like a cross between a personalized web site and social media in that family or assigned parties can create posts updating someone’s health status and needs, and others can provide supportive comments. However, Caring Bridge also has a planner that allows volunteers to offer help with all the categories described above. 

Caring Bridge is free to use, has no advertising, and is a non-profit.

Meal Train — This calendar platform lets family, friends, neighbors, and colleagues sign up to provide meals for the person/family in need. It takes a lot of the administrative weight off of whomever is project-managing the family’s support, and Meal Train provides a straightforward way to organize and coordinate meal deliveries to ensure that the patient is getting nourishment and that the household isn’t eating takeout pizza for weeks on end. 

  • Create a free Meal Train page for the person/family whom you’re supporting. 
  • Enter the dates when meals will be needed.
  • Fill in all of the preferences including favorite foods, food allergies/sensitivities, and the ideal drop-off times to avoid disturbing the patient or family.
  • Share the Meal Train link with everyone in the support network so they can sign up to provide meals.

Members of the support network might benefit from reading some of Meal Train’s helpful articles, like:

11 Trips: Meal Train Etiquette for the Savvy Participant

6 Tips for Delivering your Meal

When Dropping Off a Meal, Should I Stay or Should I Go?

Although Meal Train is free, there’s a Pro level for $15/month for groups that might need to oversee multiple support pages. For example, if your house of worship or community group makes a point of supporting families in need, Meal Train Pro is an option.

Lotsa Helping Hands — is similar to Caring Bridge and Meal Train in that it supports the creation of a caregiving community. You can organize and coordinate all of the cooking, cleaning, errand-running and other tasks described earlier in this post, and individuals can sign up to provide support based on the person’s/family’s specific needs and each individual’s capacity.

The platform includes a care calendar for volunteers to sign up for tasks, an announcement page for updating everyone on progress or setbacks, a “well wishes” pages for sending messages to the patient and family, and a photo gallery for sharing supportive pictures. 

Specialized Platforms

Not everyone makes an ideal volunteer for providing meals. But just because you (by which I mean I) can’t cook doesn’t mean you can’t provide a meal. Sure, you can use a service like Door Dash or GrubHub to dial up a person’s favorite restaurant meal and have it delivered, but sometimes you want a person to have a real home-cooked meal, even if you know they’re better off not having it cooked in your home.

To that end, I was delighted to discover Lasagna Love.

Lasagna Love provides delicious lasagnas for those in need. It might be for a patient, a family who has had a new baby, or even for someone you know who is just going through a really rough patch. Lasagna Love is a bit of a community, itself. You can:

The site describes its efforts this way (emphasis mine):

Lasagna Love is a global nonprofit and grassroots movement that aims to positively impact communities by connecting neighbors with neighbors through homemade meal delivery. We also seek to eliminate stigmas associated with asking for help when it is needed most. Our mission is simple: feed families, spread kindness, and strengthen communities.

Something tells me that the Buddhist monk in John Perricone’s classroom would approve. After all, if you’re making the lasagna for someone who needs it, it’s goes one step beyond helping Mom do the dishes. It’s may be a small act of kindness, but one with huge potential results. 

If you think you’d like to become a lasagna chef, learn how to get involved at the website and take a peek at the simple graphic, below.

Make lasagna once or become an ongoing lasagna chef or find a balance somewhere in between. Hear more directly from Rhiannon Menn, the founder:

While Lasagna Love was a brand new concept to me, the next resource is the one I’ve known about the longest, and have been gratified to recommend it to clients and others who have sought referrals.

Cleaning for a Reason — This 501(c)(3) nonprofit organization provides free home cleaning to patients battling cancer.

Cleaning for a Reason connects its trusted network of 1200 residential cleaning companies, cleaning industry volunteers, and community volunteers with cancer patients and their families to provide a clean, healthy environment.

Patients or their loved ones can apply for two free home-cleaning sessions and use this page to find a service provider. Cleaning for a Reason serves all individuals and families with any type of cancer, and patients are eligible if they’re recovering from cancer surgery, in cancer treatment, or in hospice care.

Cleaning for a Reason allows applications to be submitted by family, friends, and colleagues, as well as caregivers, doctors, and nurse navigators, but asks that you first verify that the patient is willing to accept the services.

Hear more from the founder, Debbie Sardone:

You can read about the program at the Cleaning for a Reason site and on the Facebook page.  


If someone you care about is ill or going through a difficult time, anything you do to let them know they are loved and valued will help. However, if you’re able to project-manage or volunteer by providing organized and consistent support, it will make a significant difference in their well-being during challenging times.

Whether you do the dishes, make a lasagna, organize the troops, or come armed with two boxes of tissues, it’s worth repeating: “By your smallest acts of kindness, you will save another’s world.”

Posted on: July 10th, 2023 by Julie Bestry | 12 Comments

The year is now officially half over. Have you used many of your paid vacation days? Have you used any of your vacation days?

One of the signs of toxic productivity is the sense that there’s always more work to do, more things to accomplish, and that vacation time will always be there. But the human mind needs rest just as much as the body, and going without both rest and recreation is a recipe for disaster.

via GIPHY

Going without time off is called vacation deprivation, and according to Expedia’s 2023 Global Deprivation Report, Americans take 8-1/2 fewer vacation days than our global cousins, and nearly half (45%) of Americans left vacation days untaken last year. And that’s on top of the fact that we already receive fewer paid vacation days than most of the industrialized world.

Of course, even those who have vacation days and value the time off have been squeamish about traveling. (I’ll admit, I’m one of them.) COVID is still out there, and inflation means our hard-earned pennies don’t go as far.

Still, a staycation often doesn’t feel like a vacation, and getting out of Dodge for a while is a great opportunity to reset your perspective. So, let’s at least look at some options for saving time time and money and making the travel experience less stressful.

Of course, Paper Doll has covered travel-related topics before. Back in 2018, I wrote Paper Doll’s 5 Essential Lists For Planning an International Vacation.

For what it’s worth, it’s almost entirely applicable to domestic travel, too, and covers lists of:

  • What to acquire for your trip
  • What clothing and accessories to pack
  • What other essentials to pack
  • What to do before you leave
  • Important phrases (admittedly, the most “international” of the lists)

For those who prefer to listen rather than read, much of the material covered was included in two interviews I did on the (much-missed) Smead podcast, embedded in Paper Doll on the Smead Podcast: Essential Lists For Organized Travel.

Today’s post is more along the lines of “travel tidbits,” a collection of nifty options for making travel situations more organized so you can focus your attention on relaxation.

GET SOME ELBOW ROOM AT THE AIRPORT

Let’s start with stuff. As you prepare to travel, you gather a lot of stuff to keep handy — to watch, to use, to eat. But it’s not always convenient to access it.

goDesk

Have you ever tried to set up an iPad so you and your traveling companion (or your tussling tiny humans) can watch a movie

Have you ever tried to eat a meal balanced on your lap in the boarding area because there were no tables near the restaurants, but there were also no tables at your gate?

Do you know what’s is like to struggle to find something in your bag but there’s no place to put the items as you take out and sort through them?

Wouldn’t it be nice to have a desktop space when you’re traveling? But obviously, you don’t want to schlep around an actual desk when flying, and those beanbag-bottom laptop desk surfaces designed for when you’re sitting on your couch aren’t really workable in those teeny airport chairs. But I’ve recently found what seems like a nifty solution.

The goDesk lets you transform your rolling bag into a desk/entertainment center. 

Taking advantage of the fact that almost all modern luggage pieces, particularly carry-ons, have those collapsible/telescoping handles, the goDesk can attach to your bags telescoping handle in seconds. It gives you enough desk space to securely hold a full-sized laptop, your airport meal, your child’s tablet, or the contents of your tumbled purse.

Later, when you’re ready to board, use the on/off release knob, and goDesk detaches in seconds. It’s got a slim profile, so you can just slide it in your outer luggage pocket.

The goDesk’s unique lock/latch system makes it compatible with most 4-wheel carry-on roller luggage, and it supports up to 12 pounds. The whole unit measures 11 1/2″ wide x 10″deep  x 7/8″ high (with a 10″ x 10″ desktop surface) and ways only one pound.

There’s a flip-up media stand to use with iPads and other tablets, smart phones, or small books/notebooks, and a slide-out cup holder so you don’t have to worry about your beverage wobbling and spilling on the desktop surface (or your pricey devices).

The goDesk is made in the USA with TSA-approved materials and comes with a one-year warranty. It’s available from the goDesk website for $39.95 and ships with 2-3 day delivery. 

AVOID EXCESS FEES WHILE TRAVELING

The first time I ever did any significant traveling without my family was when I was in college. I was going to be working on a special school-sponsored project in San Francisco. Although I had a debit card and a credit card, Paper Mommy took me to AAA to get American Express-backed travelers checks, where I dutifully filled out forms and signed the checks and registered them. I was told I would then countersign them when I used them to purchase anything, and if they were lost, I could easily get them replaced, just as Karl Malden promised in all those commercials.

I don’t know anyone who uses travelers checks anymore. Most of the time, you’re going to use a credit or debit card, or something like ApplePay from the wallet in your smart phone using magic technology. But sometimes, you want to have cash on hand, whether to tip a bellhop or give money to a talented busker or just pay in local currency.

The problem? When you aren’t getting cash from your own bank’s ATM, you’re likely to have to deal with an ATM surcharge fee. However, there are a few ways around that problem.

ATM Fees/Surcharges

In the US, different ATM machines (whether they are associated with banks or not) are affiliated with ATM networks. If you look on the back of your ATM card, you’ll see the network in which it participates, and there should not be a fee if you use an ATM that is also part of that network. So, if your bank uses STAR, or PULSE, or PLUS and you find an ATM in that network, there shouldn’t be a fee. However, it’s going to take some digging to get that information and locate the right ATM, and that will add frustration and take time out of your precious vacation. 

ATM Keypad Photo by Eduardo Soares on Unsplash

Luckily, there are a few options to quickly identify which ATMs do not have surcharge fees.

The Allpoint Network has more than 55,000 fee-free ATMs. Download the app or use the website. Enter your zip code, and the Allpoint search will identify which ATMs in your vicinity do not charge a fee. Scroll through the map or list to find an ATM near your current location or in the neighborhood of where you’re planning to be. (Note: the app has a geolocator function, so you don’t have to type in your zip code, which is convenient when you’re traveling in a strange city and don’t necessarily know the zip code.)   

Similarly, you can use the ATM locator on the MoneyPass website. Type in your zip code and then click on the “Search options” button. From the drop-down, make sure “All Surcharge-Free ATMs” is checked. (Other options include deposit-taking ATMs, handicapped-accessible ATMs, and 24-hour ATMs.) You’ll be able to see your options on a map and in a list.

If you’re traveling abroad and want cash, it can be especially frustrating, as surcharges may vary from non-existent to upwards of $8. (If you have to pay a flat fee rather than a percentage, consider taking out more money but less often so you won’t be drained by excess fees.)

For foreign ATM withdrawals, try ATM Fee Saver, available in 40 countries in North, South, and Central America, Europe, Africa and the Middle East, Asia, and Australia. ATM Fee Saver’s app is available for iOS and Android. The site also has a great blog with travel-related financial advice, like this one on the 9 best ways to save foreign ATM fees.

FIND A LITTLE EXTRA HELP IF YOU NEED IT

Traveling with a disability can up-end all kinds of travel plans. Whether you’re traveling with service animals, need alternative security measures (for example, if you have an implanted or attached medical advice), or will need a wheelchair or other accommodations at your destination, you’ll need to plan ahead.

To ensure that you’re getting all the right information you need, be sure to review the following resources:

Traveling with a Disability (Centers for Disease Control and Prevention) — This covers a wide variety of tasks, like contacting your physician in advance of your travel to ensure you have destination-specific care, acquiring MedicAlert jewelry or other notification-bearing items, to specialized considerations for air and cruise travel.

Traveling with a Disability (U.S. Department of Transportation) — This includes the Airline Passengers with Disabilities Bill of Rights and other helpful information.

Travel: Tips for People with Disabilities (DisabilityInfo.org)

10 Tips for Traveling With Physical Disabilities (Travel Channel)

Traveling abroad with disabilities: Here’s a post-pandemic guide (USA Today)

How to Travel with Invisible Disabilities (AARP)

6 Tour Companies Dedicated to Travelers with Disabilities (Condé Nast Traveler)

Speaking of disabilities, it’s been really gratifying to learn that great strides are being made in helping travelers living with invisible disabilities.

In case you’re unfamiliar with the term, invisible or hidden disabilities can refer to any type of disability that is not obvious. If you see a person in a wheelchair, using crutches, or walking with a white cane, that’s a visible disability. Invisible disabilities may relate to physical concerns that are not immediately apparent (anything from deafness to asthma, heart conditions to diabetes). But they may not be primarily physical in nature — consider Alzheimer’s, aphasia, dyslexia, autism, etc. Any of these can make traveling problematic.

Hidden Disabilities Sunflower Program

Recently, I was fascinated to learn about the Hidden Disabilities Sunflower program. This program provides lanyards with yellow sunflowers on green backgrounds to alert airport and airline workers that the person wearing one might need some extra time or assistance. Imagine how much easier it would be to have people trained to look for the lanyard rather than always having to jockey in line to request assistance for yourself or someone with whom you’re traveling!

The key is that you don’t need to disclose your specific disability to get a lanyard, nor does the lanyard say why you need help, because “why?” is beside the point. Instead, workers are trained to recognize that individiuals wearing the lanyards may need help, support, or additional time, and should ask, “How may I help?”

That said, individuals can personalize the card (for purchase at a small fee) for their lanyard with up to five different icons (of 25 available) to help identify the kind of assistance they may need. For example:

Hidden Disabilities Sunflower initially launched at the UK’s Gatwick Airport in 2016. The program has now grown to include about 216 airports worldwide in 30 nations, including 93 here in the United States (of which 19 will be launching the program soon). British Airways, Air France, and ten other airlines, along with many other businesses, have also signed on to participate in the program. 

In addition to prioritizing assistance, airports and shopping venues are developing Sunflower programs. At the Pittsburgh airport, to help individuals with sensory issues, they’ve developed a room with tunnels, wall displays, rocking chairs and special lighting to create a soothing environment. The Seattle airport has a similar Sensory Room and Interfaith Prayer area.

Learning about this reminded me of the large tunnel between concourses at the Detroit airport with psychedelic lighting, which I originally saw in 2016. On each side of the tunnel, there’s a button to push so that people with epilepsy or other sensory issues for which the tunnel would create difficulties can stop the effects. Push the button and the strobe and lighting effects cease for the period it takes to cross to the other side, then start again soon after.

So far, the Hidden Disabilities Sunflower index includes more than 900 disabilities, and there’s a form to list any that have been missed. 

The Sunflower lanyards are free. 

Find an airport or business participating in the Hidden Disabilities Sunflower program here.


If you do travel in the coming months, I hope you have a safe, serene, and organized journey.