A wooden boardwalk extends over water. The side railings are shades of green and yellow. There are mountains in the distance under a partially cloudy sky.

Saying Yes

I was born with a progressive neuromuscular disease. When I was diagnosed at age three, doctors could not predict how long I would walk, when I would need to use a wheelchair, or even how long I would live.

My parents chose to raise me as a person with capabilities, rather than limitations. Sure, there were activities I could not do. This did not excuse me from chores I could perform, such as washing and drying dishes, or setting and clearing the table.

I was raised to be an optimist – to look for possibilities when others might see challenges, solutions when faced with barriers.

They were shaping what would become my manifesto.

I left my small upstate New York hometown on August 16, 1990, to live for a year as a Rotary Youth Exchange Student in Tasmania, Australia. Thousands of students participate in this international exchange program each year. However, I was one of the first disabled students to successfully complete an exchange year through Rotary International, and the first wheelchair-using student in the program.

Living on the other side of the world for ten months as a teenager taught me important lessons about tolerance, culture and advocacy. But the most important lesson came from advice I received the night before I left home when our neighbor, Doctor Kenneth “Doc” Benson, DVM, came over.

Denise, you are going to be invited to many events this year. You will have lots of opportunities to see new things and meet new people. Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

Say yes. Do it all.

During my exchange year, I said “YES!” to every invitation. I went to dinners, barbecues, parties, sailing trips, basketball games, museum tours and concerts. I traveled from the island state of Tasmania to mainland Australia three times. I toured Tasmania with fifteen other exchange students and then toured mainland Australia with eighty-four exchange students. It was one of the best years of my life.

By the time I returned to the United States, saying yes had become a way of life. I have a wealth of stories to tell because I chose to say yes when others may have said no.

Want to go for a spur of the moment ride to New York City on Saturday rather than sit in the dorms? Sure!

Travel to Rhode Island to watch the local hockey team win a play-off game on the weekend of college graduation? I’m in!

Enter a national competition for women who use wheelchairs? Why not – sounds fun!

Sing at an event in Washington, DC on the eve of a predicted snow storm even though you might get snowed in? It would be an honor!

As my physical capabilities have declined, it has become more challenging to say yes. I still say yes as often as possible, but doing so now requires more effort and planning. In 2014 when I was asked to return to Australia to speak at a 2015 conference, I said yes on instinct without thinking. Thankfully, I had a year to prepare. It took months of research, planning and the assistance of many to make the trip a reality.

Living with disability makes saying yes an exercise in problem solving and strategic thinking. Yet, it is not impossible to say yes even when one relies on others for personal care assistance.

I have required more assistance for over a year due to a sharp decline in my abilities following last year’s femur fracture. I have not been able to drive independently for months, and may not be getting a new van until the end of this year. I have been constantly recruiting and training new Personal Assistants to meet my basic needs. It has been one of the most challenging periods in my life.

It is tempting to just withdraw while I wait for more independence. I have not always wanted to say yes because sometimes it is just easier to say no. It takes less effort to say no. It costs less time and money. It is less stressful.

Whenever I feel like saying no, I am transported back to the summer of 1990. I am sixteen years old again, about to leave for what will end up being the most influential year of my life. I hear Doc’s voice once more in my head and I am reminded that I have no regrets about missed opportunities.

Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

The next time you find yourself faced with opportunity, give yourself permission to say yes. It may not be your first instinct. It may not be easy. It might take planning and preparation, and even then it may not be worth it.

But you won’t know until you try.

When Will I Get Carried Away?

Thursday morning as I ate my oatmeal and scrolled through my Twitter feed, I noticed a story with the headline American Airlines Checked My Dignity at the GateI opened the post which was written by Mark E. Smith, or WheelchairJunkie as he is known to me via social media. In case you missed it, here’s a synopsis.

Mark is a power wheelchair user who travels frequently for his job. His recent trip with American Airlines earlier this week started much like any other trip. After working for 5 days at a trade show in Southern California, he was ready to return home to his wife and children. Being familiar with the process of flying while disabled, Mark arrived at his gate ready to pre-board, with his ticket in hand and wheelchair tagged for baggage. He was assisted to his seat and waited for departure as the other passengers boarded around him.

However, Mark didn’t get to take that flight home. Here is how Mark described what happened next:

“Seated in row 24, my attention was called away from looking out the window, to a large group of American Airlines’ flight attendants, gate agents and ground crew – a sea of varying uniforms and two-way radio chatter – coming up the aisle. Without speaking to me, they asked the two women sitting next to me to move from their seats, explaining that they were removing me from the plane. I was immediately alarmed, not knowing what was going on, and asked what the issue was? Everyone in the American Airlines group paused and the entire plane was voiceless – just the mechanical hum of the 737.

I looked from one person to the next to the next, and all just stared. Finally, a flight attendant exclaimed, “This plane isn’t leaving without him!” and sat beside me. Her sudden burst of emotion confused me even more. I was then told that communication between the captain and ground crew instructed that he wouldn’t accept me and my wheelchair on the flight.

I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair.”

This is not the first time I have heard of a disabled person being refused passage on a flight. Back in 2010, US Airways escorted frequent traveler and motivational speaker Johnnie Tuitel from a flight. Tuitel was in his seat before airline personnel told him he would not be able to fly without a companion, something he does regularly. But, according to this article on CNN:

“US Airways spokeswoman Michelle Mohr said Tuitel was not deemed unfit to fly alone just because he uses a wheelchair.

‘He did not appear to have the ability to assist himself in evacuating in the event of an emergency. He appeared to have a lot of difficulty moving,’ Mohr said.”

Incidents like this just don’t happen in the United States. In 2015, Luke Kenshole was escorted off a British Airways flight in London after all passengers had boarded. His crime? Being disabled. Luke has cerebral palsy and uses a wheelchair. According to this article on the Daily Mail:

Luke was on the plane before anyone asked him whether he was able to take himself to the toilet, and he said he needed assistance to get onto the wheelchair.

He was then told he would have to get off the plane for health and safety reasons.

Just for the record – I flew from Los Angeles, California to Melbourne, Australia in 2015. I was not able to take myself to the toilet on the plane during the 15 hour flight. Since I pre-boarded the plane before the other passengers, I spent over 16 hours in seat 49C. I was not kicked off the plane for health and safety reasons, although choosing to hold my pee for 16 hours was probably more detrimental to my health than anything else I did that year!

On Thursday, I shared Mark’s post on social media. Some of my friends expressed outrage. Some questioned how it is legal for an airline to act this way towards a disabled passenger. I wanted to answer this question so I started to do some research. I am not a legal expert, and if any reader has insight I welcome you to share it with all of us.

First off, the Americans with Disabilities Act is not the law which governs airline behavior when it comes to disabled passengers. The Air Carrier Access Act governs airlines and provides regulations related to treatment of passengers. According to the U.S. Department of Transporation rule (Title 14 CFR Part 382), airlines are prohibited from discriminating against people with disabilities. The following, taken from the U.S. DOT website, is a few of the prohibited practices:

  • Airlines may not refuse transportation to people on the basis of disability. Airlines may exclude anyone from a flight if carrying the person would be inimical to the safety of the flight. If a carrier excludes a person with a disability on safety grounds, the carrier must provide a written explanation of the decision.
  • Airlines may not require advance notice that a person with a disability is traveling. Air carriers may require up to 48 hours’ advance notice for certain accommodations that require preparation time (e.g., respirator hook-up, transportation of an electric wheelchair on an aircraft with less than 60 seats).
  • Airlines may not require a person with a disability to travel with another person, except in certain limited circumstances where the rule permits the airline to require a safety assistant. If a passenger with a disability and the airline disagree about the need for a safety assistant, the airline can require the assistant, but cannot charge for the transportation of the assistant.

Let’s look at that first bullet point. When was the last time you heard the word “inimical” in real life? In case you don’t know what it means (like me) I’ll save you the trip to the dictionary. Inimical is an adjective which means likely to cause harm or have a bad effect. Used in a sentence: The disabled passenger was bodily removed from his seat because the pilot thought he was inimical to the safety of the flight from Los Angeles to Philadelphia.

Secondly, every airline provides passengers with a contract, usually referred to as Conditions of Carriage. You know that legal mumbo-jumbo you ignore when you purchase your tickets? Yeah – until yesterday I had never read that either. But I did read the American Airlines Conditions of Carriage and found a section called “Acceptance of Passengers” which listed various reasons American may refuse to transport or may remove a passenger from a flight. Number 5 on that list?

Your physical or mental condition is such that in American’s sole opinion, you are rendered or likely to be rendered incapable of comprehending or complying with safety instructions without the assistance of an attendant.

Side note – number 11 is an offensive body odor not caused by disability or illness. I know for a fact that rule gets ignored often! Back to the issue of being too disabled to fly…

Let’s suppose the pilot thought Mark was inimical to the safety of the other passengers on the flight. I don’t know why Mark, a disabled adult, might be more inimical than an unaccompanied minor who might not be able to independently follow directions during an emergency. I have never witnessed an unaccompanied minor being physically lifted and restrained in an aisle chair and removed from the cabin of an aircraft. Would people speak up if that happened? Nobody spoke up for Mark.

“As I scooted across the seats toward the crowd, having to transfer into a dolly-like chair so that they could roll me off of the plane, all of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life, in the microcosm of that American Airlines Boeing 737, I was discarded as a human being – literally.”

I almost cried when I read this paragraph. Having been late for connecting flights due to weather delays, I have endured the stares when I am carried onto a plane after all other passengers have boarded, the glares and sighs from those around me who are inconvenienced by having to move so I can be lifted to my seat. I cannot imagine what it would be like to be forcibly lifted and removed like a criminal, without an explanation from the crew.

Thankfully, Mark was able to get home on the next American Airlines flight to Philadelphia. His experience was featured on his local television station. You can hear Mark talk about it in this report and you can read what New Mobility had to say about it here.

Every time I fly, a part of my mind wonders how I will react if the crew challenges whether or not I will be inimical to the safety of the flight. Typically, once I am settled in my seat on the plane, the flight attendant comes over to ask how they might be of assistance. If I am flying without a companion, I let them know I might need the plastic bin I use as a footrest in flights moved when we are in the air. Usually, the stranger seated next to me offers to help once I introduce myself and explain how I’m counting on them to secure my oxygen mask if the cabin loses pressure.

The simple fact is once I am on the plane, I am not able to do much for myself. I can usually put in my own earbuds. If I have a tray table in front of me, I am able to hold myself upright so I can eat and drink. Other than that, I am unable to do much more than sleep and count the hours until I can get back into a comfortable seat.

My fear is that one day, an uneducated pilot or crew member will see me and decide I am too much of a risk. When they come for me with the aisle chair, will anyone speak up for me and my humanity?

The Citrus Peeler

This past weekend I sobbed because of a citrus peeler.

You’re right. It really wasn’t the fault of the peeler. But the sobs snuck up on me when the peeler was in my hand, so it’s a convenient excuse.

Wait, you don’t know what a citrus peeler is?

A citrus peeler is a plastic tool used to help peel citrus fruits. I know, you got that from the name. It has a sharp cutting hook on one end that can be used to slice through the skin of an orange, or in my case yesterday a grapefruit. The other end is a thin, slightly curved, flat piece of plastic which can be used to peel a section of peel away from the fruit. You use the cutting edge to make slices down the sides of the fruit, then peel the sections away with the peeler.

A blue plastic citrus peeler.
My citrus peeler.

Do you need a citrus peeler to peel an orange or grapefruit? Of course not.

However, my father used to swear by his peeler. From the first time he brought one home around the time I was ten years old, he rarely peeled an orange without it. He enjoyed his citrus peeler so much, he bought an extra just in case his trusted peeler broke.

When I was a teenager, Dad would grab his citrus peeler and an orange at night when we sat on the couch to watch Jeopardy! together. We would share the orange while I shouted out answers, trying to beat the contestants. Sometimes, mouth full of fruit, I would frantically wave my hand at the television, moaning when I knew the answer but the contestants got it wrong. Dad would laugh and shake his head.

If you ever make it on the show Neecie, don’t bring any food.

Yesterday, I sat watching a movie, a half peeled grapefruit in my lap, sticky citrus peeler in my hand, and it hit me. I eat fruit this way because of my father. Without warning, the memories of shared snacks came at me.

Grief is sneaky like that. You can be perfectly calm, doing something mundane like peeling a grapefruit, and all of a sudden you find yourself unable to breathe because your insides are being twisted by a crushing vice. I feel as if it waits for you to delude yourself into thinking you’re managing. You’re in your routine, coping as best you can, not mired in overwhelming feelings of loss, and BAM! Like a coiled cobra, grief lashes out and strikes, the venom paralyzing you in a heartbeat.

Which is how I found myself crying over a grapefruit yesterday, holding a sticky citrus peeler. And once the floodgates opened, they didn’t close.

After Dad’s death in December, I knew eventually I would have a melt down. I thought it might happen on his birthday in January. When it didn’t, I thought maybe I’d break down when I next visited his grave. I never expected it to happen on a Sunday afternoon in March while I peeled a grapefruit.

I’m sure it will happen again. I wish I could say that it won’t. But grief doesn’t work in neat, predictable patterns. Next time it may be something other than the citrus peeler. I hope it is, because I’ve cried enough tears over that!

 

Strengthening My Advocacy Muscles

I have never considered myself a political activist. Sure, I have advocated for causes I believe in and participated in legislative visits and meetings with my elected officials. But I have not attended rallies or marches. I have never chained myself to an escalator or thrown myself in front of inaccessible buses, like other disabled activists I admire and respect.

However, because of my job and my situation as a Consumer who uses Consumer Directed Personal Assistance to remain independent in the community, I am in a unique position to speak to the importance of adequate wages for home care workers. Last Tuesday, Bryan O’Malley, the Executive Director of the Consumer Directed Personal Assistance Association of New York State, and I spoke about this issue with Liz Benjamin on Capital Tonight, a political news program broadcast statewide in New York on Time Warner Cable. You can watch the interview by clicking on this link.

Then, yesterday I did something I have never done. I gave testimony at the New York State Assembly Hearing on Home Care Workforce in Albany. The hearing, which was held by the Assembly Committees on Health, Labor, Aging and the Task Force on People with Disabilities, brought together people from licensed home care agencies, state and county offices of health and aging, managed long term care plans, fiscal intermediaries, unions, home care workers and Consumers. Over thirty people spoke at the hearing, which went on for more than ten hours.

I was the first Consumer using home care called to speak at yesterday’s hearing (there was a hearing in New York City last week). Some of my friends have asked me  about my remarks, and since they will now be part of the public record, I am happy to share them here. You can find them below.

As I sat and listened to the many speakers yesterday, I noticed some consistency among the comments:

  • Recruiting good home care staff is a challenge around the state, particularly in rural areas where the distance between Consumers may be 15-20 miles.
  • Many elected officials still don’t have a clear understanding of Consumer Directed Personal Assistance, and why it is a vital option for many people who rely on home care.
  • When home care agencies increased wages for home care workers, they were able to recruit and retain staff. But, since most long term care is paid for by Medicaid, without the state increasing funding, agencies and fiscal intermediaries are not able to support higher wages.

What next? I will continue to work with my employer and with other advocates to make sure the Consumer voice is heard. We must ensure that legislators understand when they are talking about this matter, they are talking about real people, with real families and jobs, with real needs. I raise my voice because I know I have peers who may not be in a position to be able to speak out.

For those who are interested in my testimony, here is what I said yesterday at the hearing:

My name is Denise DiNoto, and I live in Waterford. For the past 10 years, I have managed my home care services as a Consumer through the Consumer Directed Personal Assistance program. I am here today because of the difficulties I face ensuring I have adequate staff.

As a Consumer, I get to be the “CEO of me,” in charge of personnel. I recruit, train, supervise and manage the staff I hire to be my Personal Assistants, or PAs. As their employer, I am given the maximum amount of independence, allowing me to live independently. Because I have PAs, I am able to work full time, volunteer for causes I believe in, and serve my community as President of my Rotary Club.

My PAs are dedicated, kind and caring workers. They serve as my arms and legs, helping me with every activity of daily living. From 6 AM every day when the first one enters my house until 9:30 PM when the last one leaves, they provide vital services such as getting me in and out of bed, on and off the toilet, showering, dressing, and grooming. They prepare my food, do my laundry and grocery shopping. They open my medications, clean and change my bi-pap supplies, and help me perform daily range of motion and exercises.

Recruiting and retaining staff has become increasingly difficult since I started using Consumer Directed Personal Assistance ten years ago. One of the key reasons for this is the low wage I am able to offer my staff. Some of my PAs have been employed with me for ten years, and have only seen one raise during that time. That is not because they do not deserve a raise. It is because the Medicaid reimbursement to my Fiscal Intermediary has not permitted a raise. Consumer Directed Personal Assistance is a Medicaid funded program, so if the funding to Fiscal Intermediaries, the agencies we must use to help us pay our employees, is not adequate, the wage we pay our Personal Assistants is not going to be attractive.

The job of a Personal Assistant is deeply intimate, and is not for everyone. I have been forced to retain workers who showed up consistently, but were not quality workers, simply because having someone was better than not having anyone. This action brought about disastrous results last year when one of my former PAs dropped me during a transfer because she did not listen to me or follow my instructions. I fractured my femur, which required a lengthy surgery, and then spent a total of 4 weeks in the hospital and rehabilitation. I have been continuously recruiting staff since returning home last February.

At any time, I usually employ 14 PAs to cover the 70 hours of care I am authorized to receive each week. Of these, 6 are my primary workers, with the rest being back up or “emergency” staff. In just the past year, I have had 6 PAs leave my employment, and have been continually recruiting new staff since February 2016. When I asked my former PAs why they left, the number one reason was that they were not earning enough money.

Without my staff, I would not be able to live in my house. I would not be able to work. I would not be active in my community. I would not survive.

I respect the work performed by my staff, and home care workers across our state. I would like New York State to respect that work, by allowing Consumers like me to pay an adequate wage. Then, we can more effectively recruit and retain quality staff, keeping us in our communities and homes where we belong.

My Go-To Tunes: Musical Memories

Sometimes, I’m going through life doing something completely mundane when all of a sudden my brain becomes aware of a song and I’m instantly transported to a different place and time. This happened yesterday as I was completing an overdue monthly expense report for my employer. I heard the high hat and the keyboards and started bopping in my chair. In came the bass, and I turned up the volume on my headphones without even realizing what I was doing. I started singing the first chorus before I became aware of the sound coming out of my mouth.

Sidebar – this happens all the time, much to the annoyance of my former cubicle neighbors when I used to work in the cube farm. “I’m sure you think you have a lovely voice, but it’s very distracting when you sing at your desk.” Um, well, I actually do have a good voice, but most of the time when I’m singing at my desk at work, I really don’t notice that I’m doing it. I’ll try not to listen to music but you screaming into  your phone is a distraction too! Is it any wonder I didn’t last there?

Back to the story…

When this happened yesterday, I was transported from my home office in Waterford, New York, USA, to the house on Mirramar Park in Blackmans Bay, Tasmania, Australia. I was sixteen years old in September 1990 when my host brother, Mike, blared the song at 6:45 AM and yelled at me to get out of bed. I remember the moment because it was one of the few mornings I did not get up before Mike to get ready for school.

This memory sparked another memory – February 15 is Mike’s birthday! A glance at the clock and some quick calculations and I realized it was already February 15 in Australia. I left a quick note on Mike’s Facebook page, sharing my musical memories and birthday wishes. He replied this morning (well, morning for me but I’m guessing he’s heading to bed).

Denise – You are AWESOME! I still absolutely love that song!!! i will play it tomorrow to my 3 daughters in your honour! I love how the bass line kicks in half way through the bar on the off beat…gold!

I love that music can be a universal language, connecting me to friends and family who happen to be on the other side of the world. Some people associate memories with food or scents. I know someone whose memories are triggered by clothes. But my memories have always been sparked by music.

The song that served as my memory spark this time was Modern Times by Daryl Braithwaite. Included on his album Rise, it is a staple on my “Aussie Tunes” playlist. I’ve listened to it hundreds of times, but yesterday I was struck by the second verse. Though the song was released twenty-seven years ago, the lyrics are still relevant.

Somebody pulls the trigger, while somebody waits to get hit

Somebody freezes in the winter, and I’m complaining about the heat

Nobody listens these days, though they’ve all got something to say

I’m singing songs about waiting, and you’ll come back some day

Now I need to go listen to the song again. You can listen to it too, in honor of Mike’s birthday.

Furrry, fuzzy baby penguin chick holding a bouquet of pink roses.

I’m Fine Without a Valentine

If you ask my closest friends, they will tell you I am a romantic. Of course, I will deny it at first, even though deep down I know it’s true.

I love love. I love doing nice things for those I love. I love giving unique gifts I know will be loved and appreciated by the recipient.

But I don’t love Valentine’s Day.

It’s not because I have spent the vast majority of Valentine’s Days without a romantic love. Granted, this will be the 24th Valentine’s Day since I was 18 years old and I have only had a romantic love for 4 of those days.

Yes, I love having a romantic partner when that is a part of my life. It is thrilling to have someone who honors your vulnerability and likes you anyway; someone who shares intimate secrets and sends your dopamine levels soaring with compliments and kisses.

However, my self-worth has never been tied to having a romantic relationship with a man. I have always been comfortable on my own, not really able to understand those people who felt like they needed someone to “complete them,” or make them “whole.”

Some of my friends tell me it’s just because I haven’t met my “soul mate,” the person I am “supposed to be with.” They tell me to just hang on and when the time is right, “Mr. Right will come along.” What if I’m alright without a Mr. Right?

My dislike of Valentine’s Day is not because I have not been exposed to extended romantic relationships. My parents celebrated their 63rd anniversary last July, six months prior to my father’s death in December. My grandparents, aunts and uncles, sisters and brothers-in-law, many friends – all examples of strong marriages and relationships I am blessed to witness.

I certainly don’t dislike Valentine’s Day because love is absent from my life. I am fortunate to have a wide circle of support, love and affection from a variety of friends and family. These connections are central to my feeling of well-being and happiness. They sustain me when times are challenging and help me celebrate the good.

Maybe my dislike of this day meant for lovers stems from the fact that even if I found romantic love and wanted to get married, marriage is not a realistic option for me due to my disability and my need for long term care. Like most people who receive home care for an extended length of time, I rely on Medicaid to pay for my Personal Assistants. Thanks to the New York Medicaid Buy-In Program for Working People with Disabilities (MBIWPD), I am allowed to work and earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. It also varies from state to state. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. However, as a single person receiving services through the MBIWPD in my state, I can earn up to approximately $60,000 annually (the exact amount changes each year) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy. Insurance does not pay for long term care though. Medicaid pays for the personal care I need to remain an active member in my community.

But if I marry? A married couple can only have a joint income of approximately $81,000 annually to qualify for services.

I am authorized to receive 70 hours of home care each week. If I were to pay out of pocket for this care, it would cost me approximately $20/hour. That is $1,400 each week, or $72,800 a year. Just for personal care. That is more than my current annual salary, since I cannot earn more than $60,000 and still qualify for home care.

I have always said I will never put myself in a situation where my safety and security are dependent on another person. Part of it is my own independent stubborn streak, and part of it comes from conditioning from my parents who told me repeatedly as I was growing up how important it is that I be able to take care of myself. If I were to marry, I would need to find another job with a higher salary to cover the cost of my care, never mind my living expenses.

Sure, I could find a job that pays more than $100,00/year. Those jobs exist. I have the degrees and skills to be successful at those jobs. But as much as I complain about playing the Medicaid game (proving my disability every six months, tolerating the home visits from nurses and social workers to assess my needs), I play it because I need to. I am dependent on these services to live independently in my community where I am loved and valued, and can give love to those who are important to me.

That’s the love that matters most to me.

However, if anyone has any leads on “Mr. Right,” I’m not opposed to having some fun… 😉

Image of blank computer keyboard with the words "BIG DATA" resting on the keys.

I Still Don’t Like This

A year and a half ago, my friend Crystal and I wrote guest posts for our respective blogs about an experiment we conducted on social media. You can read her original post on my blog here, and my post can be found on her blog here.

Both Crystal and I stopped using the “like” button on Facebook to see if we noticed a change in our news feed, or perhaps a change in how we interacted with social media. I have not gone back to using the “like” button since we began our experiment in August 2015. For a year and a half, if I have enjoyed, or disliked, or had a reaction to something in my news feed, I have taken the time to write a comment. Or, I have simply scrolled on by if I felt no real need to comment at all.

This change caused me to be more intentional with social media. Instead of my use of Facebook serving as a giant time suck, I now go to the site with the intent to catch up on what my friends and family are doing. I can’t stop using the site since my employment responsibilities include managing two Facebook pages, and I also help administer my Rotary Club’s Facebook page. Last year, I agreed to help serve as a volunteer moderator for the Disability Visibility Project Facebook page. Do I spend more time on Facebook than I probably should? Yes, but I view the site as a tool which can help me maintain connections to friends and family when I might not have time for a phone call and I am too much of an extrovert to give it up.

Then last week my friend Tonia shared an article about Big Data which I read with interest. The article, which was originally published in Das Magazin, described how political campaigns use psychometrics (sometimes called psychographics) for “innovative political marketing.” Now more than ever, it is easier for companies to use a person’s digital footprint to predict how that person will act in a given situation. I don’t claim to understand all the research, but it makes sense that data gleaned from a person’s social media feed or digital activity can be used to make predictions about that person.

For example, if you were to look at my “saved” files on Facebook (which I use to bookmark articles I want to read when I have time), you would find articles from the Washington Post, New York Times, The Guardian, and several websites for media outlets such as PBS, NBC News, and ABC (Australia, not America). You would also see blog posts related to writing and crochet, and many disability blogs. A scan of my saved articles indicate about fifty percent of them relate to disability, twenty-five percent relate to writing, and the rest are a mix of articles about crochet, baking, musical theater and dealing with grief.

Based on just this information (remember, I have not provided any “likes” to analyze), one can fairly accurately predict I pursue writing, and that either I have a disability myself or am very active in disability circles. My hobbies (baking, crochet, and musical theater) are apparent. It’s no wonder that ads for Broadway HD show up with regularity in my news feed!

But, how are all those data points used by others? What else do I see because of assumptions made by analysis of my digital footprint? Which articles are placed in my view based on my social media activity? Would it change if my online behavior changed? I will admit, I never noticed a significant change in what I saw on Facebook once I stopped using the “like,” yet it’s possible there was a difference I just didn’t observe.

Do I think I have some semblance of privacy because I choose not to use the “like” button? Of course not. My smartphone acts as a transmitter, giving apps various information such as my location, how often I travel certain routes, what I search for on Google, and how often I win or lose at Words with Friends. Sure, I could opt out of using my phone as often or restrict certain apps to gain more privacy. But I use my phone to help me manage my personal assistant staff which limits my ability to disconnect.

For now, I will continue to steer free of the “like” button. I will also probably stop taking online quizzes – because how many times do I really need to prove I am an extroverted word geek who has a vast knowledge of show tunes? I think I’ve provided enough evidence of this to Big Data, especially since I just aced the “name the musical movie from one screen shot” quiz.

Something Not Rotten At All!

If you are a regular reader, you know I love Broadway musicals. For me, there is nothing like escaping from reality for three hours while a talented group of musicians and actors transports you to another world where people burst into spontaneous song and dance.

Some friends and I have been season ticket holders for the Broadway Series at a local theater for several years. We have seen great performances without needing to take the three hour train ride to New York City. Each year, we speculate about what shows might be featured in the coming season. As soon as we heard about Something Rotten! we put it on our list of “must sees” and hoped the tour would stop here. So we were all excited last year when it was announced that Something Rotten! would be part of this year’s offerings. I had hoped to see the show in New York City, but knew that wasn’t going to be possible once I broke my leg last year and travel became more difficult.

Because things have been very busy these past two months, and since I spent most of December withdrawn from the world due to my father’s death, I missed much of the publicity about the show. I also did not take any time to research the cast or read reviews, something I normally do. I knew the show would be funny, based on this sneak peek from the 2015 Macy’s Thanksgiving Day Parade. That was all I really needed to know.

Since I did not pay attention to any of the pre-show press, I was surprised when I entered the theater and saw Adam Pascal’s name on the cast list. To say I have had a mild infatuation with Adam for more than twenty years is like saying some cats like catnip. Not sure who Adam Pascal is? Maybe you’ve heard of a little musical from the mid-1990’s called Rent? You know, the one with the the song upon which I based Thursday’s blog post? Yeah – that show! Adam was the original Roger. He’s since gone on to star in other shows, such as Aida, Memphis and Disaster!

Let me put aside my obsession feelings toward Adam and offer my opinion on the show. It was FUNNY! You don’t have to be a Broadway musical geek to enjoy the show. But if you are? You’ll love it! I tried to count the many musical and lyrical references to other musicals and gave up after thirteen. Cats, Evita, The Fantasticks, Phantom of the Opera, Chicago, Sweeny Todd, Rent, South Pacific, Annie – the list goes on and on. I know I missed things because I was laughing, which only makes me want to see it again. If the show is coming to your city, I recommend you go. Three hours of fun and laughter, song and dance, plus a hot man who can sing who struts around with his shirt open for part of the show! Who can’t use that right now?!

While I loved the show, the highlight of my day happened after the final curtain. Knowing we had time to wait before the bus home, I told my friends I was going to try to get to the stage door for an autograph. Believe it or not I have only waited at the stage door after a show once before – when my friend Lauren’s brother Matt Meigs was in town with the tour of Mary Poppins. (Matt is currently performing in Holiday Inn and you should absolutely go and see the show if you are in New York!)

I held back as the crowds cleared the lobby outside the stage door, scoping my best course of action. After a few minutes, it became clear who was still trying to get out of the theater and who was waiting for autographs. I stealthily rolled around the crowd, doing my best to avoid running over toes while gradually inching my way between people until I was at the front, to the right of the stage door. I was just in time because once I got into prime position, the door opened and the first cast member walked out.

I waited patiently, preserving my space by occasionally moving my feet from side to side so nobody stepped in front of me. Then Adam came out and was greeted with loud acclaim. I was the first person he saw before people started shoving Playbills in his face. He autographed Playbills for everyone, graciously accepting their compliments and posing for photos as he turned towards me. When it was my turn, I simply smiled and handed over my Playbill as he leaned over and said, “Let me take care of this young lady.” Swoon!

He continued to stand next to me, signing Playbills and taking photos, thanking everyone for coming. I told him there was no way I could move out of his way because of the crowd.  “Oh, no, don’t move. You’re helping to give me space!”

Who said a wheelchair wasn’t useful?! I totally played the disabled card to get to the door, and it worked! When he was done, I moved out of the center of the crowd, which gave him a path so he could get to other people. Free from the crush, I finally brought out my phone and asked for a photo – which is how this came to be.

Selfie of a white man with blond hair and goatee next to a white woman with glasses and brown hair. The pair are smiling and are back-lit by hallway fluorescent lights.

Sure, the lighting is not perfect. But I got a photo! This theater geek is a happy girl indeed.

Sometimes, when we meet the people we admire, we are disappointed because they don’t behave the way we think they will. Or, perhaps they are rushed for time or having a bad day and the encounter is not what we wished for. Yesterday, I had the best celebrity encounter I could have imagined. Adam was kind, generous, gracious and appeared genuinely appreciative of the fans who waited to meet him.

Now, if you’ll excuse me, I’m about to go listen to the Something Rotten! soundtrack yet again to see if I can catch more of those musical references. Feel free to stay and drool over that smile for as long as you like!

How Do You Measure a Year?

My world changed a year ago on January 13, 2016. That was the day one of my former Personal Assistants (PAs) did not follow my instructions, resulting in her dropping me to the floor during a transfer and fracturing my left femur.

I’ve written many posts about my progress this past year. I explained how it all happened in this post, then provided an update from the rehabilitation hospital in this post. I blogged about my transition home, and the challenges I faced as I struggled to prioritize my needs as I continued to heal.

There have been many gains this year. After months of therapy, I was able to successfully transfer into my driver seat in my van in April. Granted, performing that transfer requires such a high amount of my limited energy so I only drive when absolutely necessary. And I still can’t independently transfer back into my wheelchair when I arrive at my destination, which means I must have someone meet me so I can get out of my van.

That’s not entirely accurate. I CAN transfer out of my driver seat if I am parked on an uphill incline. Gravity still works, and when parked uphill, it gives me a boost when I slide back to my wheelchair. However, if I’m parked on an uphill incline, I can’t get back into my driver seat so I can drive back home. Stupid gravity – who said it was a good thing?!

I am still pursuing a new vehicle which will be modified with a high tech driving system. This will allow me to drive while seated in my wheelchair. The evaluation process is stalled for the moment, thanks to matters that deserve and will get their own blog post. But, eventually I will be fully independent for driving again and it WILL happen in 2017.

Five hundred twenty-five thousand six hundred minutes. Anyone who is a fan of the musical Rent, written by Jonathan Larson, knows a year contains 525,600 minutes. But as the opening song in the show tells us, time is just one way to measure a year.

I can measure the past year in the number of hospital admissions (2), the number of new internal permanent screws in my leg (8), the number of new PAs I’ve hired (4), the number of months absent from work (4) and the number of address changes (1). I can also measure the number of new great nieces and nephews born (2), the number of visits with my best friend (5), the number of blog posts (72) or the number of funerals (thankfully, only 1).

But when I think about this past year, the one word that keeps repeating itself in my head is the one thing Jonathan Larson encourages us to measure most – love. This year, I have been blessed to be the recipient of so much love from friends, family, and readers. When I first started writing about my fracture and rehab, I received cards and letters from around the world. I had at least five visitors every day for the month I was hospitalized. People called, sent Facebook messages and Skyped when I was unable to leave my house.

Although I need assistance every day in order to survive, I am bad at asking for it. I would rather do just about anything else than ask someone to help me when a PA has called in sick or has quit. However, this year I had to repeatedly ask the people in my support network for their assistance and you know what happened? Almost 100% of the time they said yes! Whenever I asked for help, I received it. If that isn’t love, I don’t know what is.

So while 2016 was full of more challenges than I’ve had to face in quite some time, it was also full of love. I’d rather measure the love.

I searched for a good video of this song and was overwhelmed at how many hits came up. Then, I stumbled on this one with ASL interpretation and knew this would be the one to share.

Going Up

Last week, my wheelchair died. I had just transferred from my chair into bed on Tuesday night, and decided to start moving it out of the way while waiting for my Personal Assistant (PA) to put the transfer board down. Only, when I pushed the joystick nothing happened.

I’m not a stranger to this. Sometimes, I don’t wait long enough for the drive motors to engage before trying to drive. I’m impatient. I like to go when I want to go. But, I know there is a start up sequence that has to run and if you try to operate the chair before it is ready, it won’t go. You’ll push on the joystick and nothing will happen.

So, last Tuesday night I did what I always do. I counted to five and tried again. Still nothing. I turned the chair off, then turned it back on and waited for another five seconds.

Zero movement.

My chair has a powered seat, so I tried those controls next. The seat base elevates and moves forward and backward, giving me more clear floor space in front of my chair during transfers. My seat elevator also makes it possible for me to reach higher objects, rise to a standing height during speaking engagements, and helps me get my own drink off the bar when I am out with friends instead of relying on others.

Last Tuesday when I tested the seat controls, it moved forward and backwards but did not change height. This was a problem because it was elevated. I elevate it most of the time I transfer out of my chair because, well, gravity still works. It’s easier to go from higher to lower than to transfer uphill.

The final piece of the puzzle came to light when I looked at the screen on my joystick. Highlighted in yellow was the message “drive fault.” This told me it was probably either the joystick, the controller (the computer brain of the chair) or the drive motor. None of them were good possibilities, but without a diagnostic tool I couldn’t do anything further. I had my PA disengage the drive motors, push my good chair out of my bedroom and get my old clunker chair out of my office.

Thank goodness I listened to Bob, my wheelchair repair guru, when he told me to put new batteries in my old clunker. Sure the old clunker isn’t comfortable to sit in for long periods of time, and I wasn’t sure how I would manage in it with formerly fractured femur, but at least the chair was made to my measurements. Five years ago, this was my daily chair. Even if it had outlived it’s daily use, it would be better than a loaner which didn’t fit me.

I used my clunker last Wednesday while Bob ran diagnostics on my chair. Of course, when my PA brought the chair to the shop, it worked perfectly. Try as he might, Bob couldn’t get the chair to fail. From how I described the error code, Bob was fairly certain it was the seat elevator, not the joystick, motors or controller. He played with some loose wires, adjusted the seat elevator actuator (a known problem on prior repairs to my chair) and arranged for delivery of my chair back to me later that day.

Fast forward to this morning, a week later. I drove my chair under the bathroom sink after breakfast, ready to brush my teeth. I activated the seat controls and moved my joystick to elevate my chair. All normal activities, except the chair didn’t move. Ugh.

Opponents of funding for complex medical technology always say adaptations like seat elevators are luxury items and not really necessary for people like me. Luxury? Well, here is a list of things I have not been able to independently perform in the 90 minutes since noticing my broken seat elevator:

  • I have not been able to brush my teeth. The bathroom and kitchen sinks are too high for me to access without my seat elevator. I could grab a cup to use as a spit cup but…
  • I can’t reach the cups in the cabinets because I can’t elevate my wheelchair. No access to cups means nothing to use to help me brush my teeth or take a drink.
  • I can’t wash my face  – another task requiring the ability to reach the sink.
  • I can’t get my sweater off the hook behind my bedroom door. I’ve tried using my reacher. It doesn’t give me enough height.

I’ve already called Bob. He’s going to look at my chair as soon as my PA gets it to him. Thank goodness for Bob. Every wheelchair user needs a Bob, and those of us who have a Bob know how fortunate we are.