the amputee bill of rights

In our most recent podcast, Peggy and I share our thoughts about which amputee rights are so fundamental that they should be included in a new amp’d Amputee Bill of Rights. We talk about how this project started, the way in which we came up with the rights included in this document and gave listeners a glimpse into the reasoning behind our choices.

But what we have done so far is only version 1.0 of the Amputee Bill of Rights. In order to finalize it, we are seeking input from everyone in the limb loss / difference world. Our goal is to ultimately publish a document that has feedback from and the support of everyone with less than four complete limbs. So we are asking you – please review version 1.0 and share your thoughts with us.

How do you do that?

  1. Download the amp’d Podcast Summary (Episode 17) and review the amp’d Amputee Bill of Rights version 1.0.
  2. Let us know what you think. What did we miss? How can we improve what we’ve already got? You can reach out to us either by contacting us through our website, or by sending us an email at ampdpod@gmail.com. Either way, please include the words “Bill of Rights” in the subject line so that we can triage responses appropriately.

We look forward to your input. The deadline for submitting your comments is Friday, April 7th. We’ll publish the community-validated/created Bill of Rights the following week.

Thanks in advance for your help! We have already received lots of great comments and can’t wait to get more.

What Limb Loss Can Teach My Son About College

08.08.11 door opener

On September 1st, my oldest son, Max, heads off to college at Hofstra University. Given my Scotch-Irish-Welsh-English heritage, I shy away from discussions with him that my wife’s Italian upbringing encourages; talks about things like … feelings.

So rather than sit down with Max one-on-one to share these thoughts with him like a normal person, it instead strikes me as infinitely more logical to post my parental advice online for the entire world to see. Max – do with these what you will …

10. Don’t Stand in the Street

I failed to follow this basic principle 6 years after graduating college and 1 month after graduating law school. Education alone doesn’t make one smart. Enough said.

9. Ask Questions

College professors know a lot. And it is your job to pay attention to what they know. But more important, you have the opportunity to question them, to challenge them (politely).

If something doesn’t make sense, ask a question. If something strikes you as wrong, ask a question. If you think you have a new or better way of thinking about something, ask a question.

I emphasize this because when, at 27, I became an amputee, I knew nothing about living life with a “disability.” And that forced me to ask lots of questions in order to understand how I could get navigate – physically and mentally – my new reality.

But here’s the cool thing: when I asked these questions – even ones that I objectively classified as dumb – I learned something new. Over time, I was able to develop my own opinions and viewpoints about whether what I had been told was objectively correct, or whether it represented one person’s opinion or simply a long-held collective assumption. And that, my friend, is called “learning.”

8. Make Friends

It became obvious to me after my accident that we rarely accomplish anything of value all alone. I succeeded in my rehabilitation only because of everyone around me. A large team of people – your mother, our family and extended family, friends, prosthetists, physical therapists and physicians – made it possible for me to achieve my goals.

So remember that you’re not alone. Go to school and give as much of yourself as you can to other people. Be loyal. Be supportive. Be a great friend. You’ll get at least as much out of doing that as you’ll get back from them when you face challenges of your own.

7. Take Care of Yourself Physically

Pulling all-nighters, eating pizza at 2 AM and sleeping in … I did all of these things in college. Don’t repeat my mistakes.

Trust me – I’ve tried over the last 20 years to “gain” extra time during the day by sacrificing my physical well-being. It’s not worth it. And I think the effect of inactivity manifests itself much more quickly since I lost my leg than it did before. When I’ve lapsed into a sedentary lifestyle, I feel it almost immediately (especially in my lower back). Conversely, the hour I spend walking a few miles, lifting weights or swimming in the pool make a huge difference, both in terms of how much I accomplish the rest of the day, and how I feel, both physically and about myself.

You’re going to spend plenty of time sitting around doing homework, practicing your music and hanging out with your friends. But please, for the love of all that’s holy, carve out 60-90 minutes every day to do something active. (See # 3, below, for a related piece of guidance.) So make yourself an hour-long playlist of the songs you love the most, haul yourself out of bed to the fitness center and allow the music to wash over you as you work out. It’s a pretty cool feeling to look at your watch at 8:30 am, fired up by the Foo Fighters, Green Day, Biffy Clyro, and – in my case – Cheap Shots (available on iTunes and Spotify for your listening pleasure), and know that you’ve already completed the task of taking care of your body for the day.

6. Touch Base With Your Family Once a Day

McGill Family Group Text: trust me – it’ll save you the annoying, “we haven’t heard from you” phone calls. Enough said. (No – this has nothing to do with anything I learned from losing my leg. Consider it a bonus item.)

5. Find a Mentor

Following my accident, I connected with lots of different people who had survived limb loss. Their experience and insight dramatically influenced me and led me to re-evaluate what I wanted to do and ultimately did with my life. Some of those people I now only speak to once or twice a year, but those discussions still have a profound and important impact on me.

Find a professor who you like and actively work to establish a relationship that goes beyond any single class you may have with him or her. Talk about your goals, your fears and listen to what they have to offer you. The future you’re planning for yourself today  – particularly a performance-based one – is challenging. But you don’t have to face it alone: a professor who has walked that path him or herself will likely have unique perspectives that could make an enormous difference in your life.

4. Treat Everyone You Meet With Respect

Before I lost my leg, I was the smart-ass, judgmental, knows-everything college graduate who was quick to judge and dismiss others. Afterwards, I met people who shared nothing in common with me other than the fact that they too were missing a body part. And I found that they were almost all unique, interesting, helpful people who treated me with an understanding and respect that humbled me.

In college, you’ll get to meet people from all over the United States who don’t share your opinions, experiences or perhaps even your values. Treat them all with respect. We have enough divisiveness and polarization in the world today already. The only way that will ever change is one person at a time. You can (and will) make a difference.

3. Respect Your Time

Following my accident, the rehabilitation process forced me into a defined routine. I had blocks of time spent at physical therapy, blocks of time at the prosthetist’s office and blocks of time at home. I only had “x” amount of time to get things done within each of those slots, so I tended to work intensely for short bursts of time. In that way, my day became a series of short (60 minutes) but hard sprints, followed by quick breaks (10 mins).

If you’re studying 18 hours a day or 2 hours a day while at school, you’re doing something wrong. College isn’t just about studying, nor is it just about hanging out and fitting in some classes between marathon ping-pong tournaments.

To find the right balance, you have to relentlessly schedule your days and always respect that schedule. There are only so many hours in a week. People who are successful figure out how to manage those hours more effectively than those who are not.

2. Take Risks

Over the last decade, there are three things I’ve done that really stand out. The first was when I hiked up and down a small mountain in Arizona. The second was last year, when an organization I volunteer for committed to getting 100,000 signatures on a petition to protect amputees’ access to prosthetics. The third was a few weeks ago, when I spent a few hours navigating an up-and-down trail in Alberta, Canada.

All of these activities took me way outside my comfort zone. In each instance, willfully navigating into into a zone of personal discomfort and working through it made them memorable, positive experiences.

Over the next 4 years, you can sit comfortably in the areas you excel at and rarely move outside them. Or you can take a poetry class, join that club you’re interested in, or start something new on campus that doesn’t exist today. I promise you, it’s the risks you take that you’ll remember and look back on with pride.

Oh – and the bonus?

The risks of “failing” at these things while in college are almost nonexistent. College is the one place you can fail at this without the consequences having a profound impact on your life. So take advantage of the opportunity.

1. Live With a Sense of Urgency

The biggest gift I got from my accident was the stark reminder that the line separating the here and now from oblivion is much thinner than you think. One minute I was safely in a car with your mother; the next I was lying in the middle of a road, my body ripped apart with EMT’s triaging me as beyond the point of no return.

While that sounds grim, it actually freed me. Instead of staying at a job that seemed like “the right thing” to do and flipping my “life and career” switch onto autopilot, I became focused on finding opportunities and experiences that would make a difference, both to me and other people.

In some ways, you’re already way ahead of where I was at your age. You know what you want to do and you love doing it. You can spend the next four years working towards a very specific goal that you’ve already identified before you’ve hit 20. And you have a gift for connecting with other people that will serve you well on that journey.

But never take anything for granted. Treat every opportunity like it could be the big break you need. Treat every show you play like it’s the one where a single video of you and/or your band could go viral. Stay in the moment.

Don’t spend your life worrying about all the things you can’t control and that could happen to you. Aim for the target and launch yourself forward without hesitation or reservation. We only get to go on this ride one time. Make. It Count.

And have fun.

I couldn’t be prouder of you. Now, as a former boss once told me, “Go out there and kill it.”

missing pieces … in 2 parts

missing pieces 03.12.15

This week I’m going to do something different and split my post in half, as there are two totally separate but important topics I want to cover.

1. New York’s limitation on prosthetic limb benefits

As some readers may know, I’m on the Board of Directors of a few organizations in the orthotics and prosthetics industry. One of those organizations – The National Association for the Advancement of Orthotics and Prosthetics (link on the upper left side of this webpage) – recently took on the task of coordinating a response to a New York State insurance restriction that could have a profoundly negative impact on prosthetic-wearing amputees.

As a result of The Affordable Care Act, every state that opted to voluntarily start an insurance exchange is required to select a “benchmark plan.” As the title suggests, the benchmark plan serves as the baseline for what all insurance plans offered through the exchanges must offer as standard benefits.

The good news is that New York’s benchmark plan covers prosthetics. But the bad news is that it covers only 1 prosthesis per limb per life for adults. One and done. And it gets worse.

I went online to see whether perhaps other New York exchange plans nevertheless offer prosthetic coverage that acknowledges the reality that amputees require a new prosthesis due to changes in their clinical condition over time. After all, the benchmark plan is just a minimum standard; an insurer could choose to offer more than what’s in the benchmark if it wanted to.

I limited my search to “platinum” plans, the ones that offer the most benefits. In my zip code, I had 32 possible separate plans offered by 7 different insurers. Here are the results:

  • United Healthcare: 1 prosthetic device per limb per life;
  • Empire BCBS: 1 prosthetic device per limb per life;
  • Emblem Health: 1 prosthetic device per limb per life;
  • Oscar: 1 prosthetic device per limb per life;
  • Fidelis Care: 1 prosthetic device per limb per life;
  • Affinity Health Plans: 1 prosthetic device per limb per life; and
  • Health Republic Insurance: 1 prosthetic device per limb per life.

And it gets worse.

The benchmark plan is issued by a subsidiary of United Healthcare: Oxford. When I co-owned an O&P facility in NY from 2001 -2006, Oxford was the only insurer with a 1 prosthesis per limb per life limitation. And I know from speaking to New York prosthetists between 2007-2014 that it remained the only payer with such a restriction, even after I left the world of patient care. But as soon as New York selected the Oxford plan as the benchmark, all of the other insurers offering plans on the exchange adopted the restriction, effectively universalizing a limitation that had been limited to only 1 payer for at least 15 years.

As an amputee living in New York with more than a passing knowledge of the Affordable Care Act’s requirements, this limitation struck me as potentially violative of multiple provisions in the law. NAAOP agreed and has allocated key resources to coordinate an effort to get this changed. Working with local stakeholders who have donated significant time and resources of their own, numerous lawmakers in Albany are now learning about the 1 prosthesis per limb per lifetime restriction. In addition, there is an online petition that allows people to communicate their outrage at this limitation. In just one week we have secured nearly 2400 signatures, but we need more.

Please make sure that as many amputees as possible go to onelimbforlife.com to sign this electronic petition. We need New York legislators to pay attention to the potentially life-changing damage that this restriction to medically necessary prosthetic care could cause individuals with limb loss living in New York. Thanks in advance to everyone who shares this link!

2. never take anything for granted

I was speaking with a friend on Tuesday morning about the 1 prosthesis per limb per life restriction. As I was getting ready to jump off the phone he said, “I’ve got some bad news for you.” I figured I was about to learn that we had missed something important in the course of developing messaging for New York lawmakers regarding this insurance issue, so I could only sit there for a moment feeling the world rotate oddly around me as he said that Phil Kreuter had died.

A physical therapist, Phil devoted a huge part of his professional life to working with people with disabilities, especially amputees. He was the person who, more than anyone else, helped me see life with a prosthesis as a life full of opportunities. It helped that Phil had a track record that made his words carry extra resonance: he had worked at numerous national and international athletic competitions, including the ’96 Paralympics. He wasn’t just spewing empty words; he had seen it and, equally important, worked with people who had done it.

When I received my first prosthesis, Phil was the guy who trained me, day after day, for months. He taught me what “hop-skip” was. He let me use the treadmill in his facility for 60-90 minutes straight, multiple days per week, long after my insurance plan’s physical therapy benefit had run out, letting me train for free while paying able-bodied patients were there. He accompanied me on my first 10K race a few months after I got my prosthesis, spending 90 minutes on the pavement at a laughably slow pace while giving me water and words of encouragement that carried me through the final miles. He donated time on the weekends to take me to the local track and taught me how to run leg-over-leg in my everyday prosthesis, before I even knew what a running foot was.

As our friendship grew, he loaned me back issues of Tricycle, a Buddhist magazine, as I started trying to gain some spiritual perspective on why I had survived my accident. We spent weekends and evenings talking about starting a not-for-profit that would provide able-bodied and disabled athletes the opportunity to compete against each other. Our theory was that we could fundamentally change the perspective able-bodied people had of people with disabilities.  (A fascinating concept that foundered on the financial reality that the cost of the physical space we’d need to do it far exceeded our respective bank accounts. And, interestingly, a concept that groups like The Wounded Warrior Amputee Softball Team ultimately validated.) I came with him when he taught PT students about treating patients with disabilities so they could see a Real. Live. Amputee. I babysat his daughters once.

Unfortunately, we fell out of touch over the last 8 years. It was nothing personal; events just made it that way. But that doesn’t make his sudden absence any less hard to process.

He was, I would guess, only in his mid-50’s and in great shape – an excellent runner and avid cyclist. So learning that he’d suffered a massive stroke and – like that – was gone, left me feeling a deep emptiness, like I’d lost something vital to who I am.

Cara asked what was wrong on Tuesday night after enduring a day of gruff, monosyllabic responses from me. “Phil was probably the person who had the greatest impact on me during the most important time of my life,” I replied. It seems completely contradictory to miss someone you haven’t spoken to in close to a decade. And yet, when it comes to Phil, that makes sense to me.

So Phil, as I type this and feel the lump growing in the back of my throat, I hope you knew how much you meant to me. I hope you understood – even though you’d deny it if I told you – that everything I achieved after my accident was only possible because I had you there to show me. I was so, so lucky to have you as a friend.

And I’ll miss you.

the (non) accidental tartan

The real McGill Tartan

The real McGill Tartan

The first prosthesis I ever received had a socket with a vaguely skin-toned hue to it. It was not an aesthetic triumph. But it wasn’t supposed to be. I had been an amputee for less than 8 weeks. My prosthetist informed me that I would receive a permanent socket a few months later after the size and shape of my limb stabilized. At that time I could hand-pick something specific for the socket.

The thought of being able to customize my prosthesis with whatever I wanted laminated over it was exciting for a guy who (at the time) had never gotten a tattoo or worn anything more daring than an occasional linen sport coat. As I mulled over my options, I remembered that I had a few square yards of our family tartan lying in a trunk in my attic. The McGill tartan is a predominantly red/green/yellow explosion that looks acceptable only two days out of every year: December 24th and 25th. But now, down a leg and thinking of how to decorate my socket, the McGill tartan finally became relevant.

My second socket left the tartan behind in favor of the U.S. men’s soccer team’s jersey, which at the time was a horrific simulated denim with white stars across it. What then followed, to the best of my recollection, was a series of superhero-themed sockets: Batman; Spiderman; a high-tech looking Superman logo; the Fantastic Four; The Avengers; Ironman; and Captain America.

I used to think that I whimsically selected socket designs based primarily on which franchise was then ramping up at the local cineplex. But as I stared at some old sockets lying around my house over the last few weeks, I began to reconsider that assumption. What if the underlying selection criteria were more subconsciously and psychologically based? The more I considered it, the more I found that explanation plausible.

Why would I ever choose the McGill tartan for my first permanent socket? All my life, the impossibly bright mashup of colors had been a punchline when my father donned his tie and my grandfather his (gulp) pants during the holidays. Even today, I have a McGill tartan tie in my closet (photo above), unworn since I received it. Neither aesthetics nor a positive historical/sartorial attraction to the nauseatingly vibrant colors should have led to my decision.

I have concluded, in retrospect, that out of the universe of possible options I chose this previously locked away swatch of cloth because it was the McGill tartan. It defined me, even with all its Yuletide garishness. It was a personal statement about reestablishing my identity. Never mind the fact that who I was looked suspiciously like the aftermath of a large Italian dinner seen while staring into a toilet bowl after a touch of food poisoning: the McGill tartan socket was my first post-accident stake in the ground when it came to showing people who I was.

In the year after my accident, I began coaching the same soccer team that I had previously played for. Soccer had been a big part of my life through high school and I came back to the game in an adult league in my mid-20’s. My  identity had always been impossibly and delusionally entertwined with my belief that I was a remarkable athlete. When viewed through that lens, the decision to select the U.S. men’s soccer team jersey as my second socket seems not only unremarkable, but inevitable. “Look – I’m still a soccer player [athlete] [normal guy]!”

As the newness of being an amputee began to wear off, I then went down the Marvel/DC socket wormhole. What does every superhero have? An origin story; a seminal event that defines who and what they are. For Superman, it’s the destruction of his home planet and the fact that he’s an alien living among earthlings; Batman arises out of the ashes of his parents’ murder; Peter Parker gets bitten by a radioactive spider; the Fantastic Four are exposed to cosmic radiation that fundamentally alters their biology; the Hulk is what’s left after a scientist gets exposed to what should be a lethal dose of gamma rays; Ironman (in the most recent movie trilogy) is born out of the trauma of a missile that leaves metal fragments on the verge of shredding Tony Stark’s heart but for the miniaturized arc-reactor technology that he incorporates into his body (and that ultimately powers his exoskeletal cyborg suit); and Captain America volunteers to become a (highly successful) lab experiment before getting frozen in Arctic ice for a generation.

Every one of these individuals emerges from the transformative experience stronger, more powerful, more remarkable than they were before. To a young guy who had walked into the middle of a road on a snowy night and woke up in a hospital bed two days later with virtually no memory of what had transpired in between, I suspect these stories subconsciously resonated with a unique acuity in the years following my accident.

Comic books and movies have been informing us for the last 65 years that the survivors of random, life-changing events morph from nerds, weaklings, or at most, ordinary people, into individuals who change the world. It’s a well-established mythology that’s so omnipresent we tend not to think about it.

As I look back on the superheroes who have graced my socket for the better part of 17 years, I have the sneaking suspicion that my attraction to them lay in more than how damn cool they look. As a person obsessed with tricking people into not noticing I’m an amputee, I navigate the world with an alter ego: the prosthetic-wearing Dave McGill that (hopefully) no one realizes is an amputee unless I choose to take off my mask. (Less colorfully described as “wearing shorts.”) Similarly, I construct my life around the conceit that I’ve emerged from my accident stronger and better than I was before. (“I am Ironman.”)

Perhaps this is an example of me creating a retrospective narrative to make random past decisions appear more logical. But then again, maybe the tartan was more than just a tartan.

inspiration porn

Stella Young seems like the kind of person I would’ve enjoyed. An Australian comedian, She spent most of her life in a wheelchair as a result of a congenital condition. Stella died last Saturday at the age of 32. Although she lived on the other side of the globe and I never had the good fortune to meet her, we shared similar views on the disabled as fountains of inspiration for our able-bodied peers.

I’ve written about this topic numerous times over the last 4 years, but the following excerpt represents my most cogent thoughts on the subject:

When I first began running road races as an amputee, I found it bizarre that so many of my fellow runners and spectators shouted words of encouragement at me. They weren’t doing that because I was a marvelously gifted runner – trust me, I wasn’t. But, especially at that time, I was one of the few amputees they had ever seen on a 5 or 10k course. I was a symbol of something to the able-bodied population.

I was, in those people’s minds, brave, or courageous, or inspirational, or some other similarly-laudatory label they attached to me because of the disconnect in their own minds between what an amputee should be and what I actually was. But this was possible, I submit, in large part because of the following paradox: at the same time that I challenged their preconceptions by participating in an able-bodied activity, I simultaneously reaffirmed the order of the universe.

I was slow. I always finished towards the end of the pack. I wasn’t in any way a challenge to the other racers. My involvement validated a reflexive, nearly-universal assumption: the disabled, by the very nature of their disability, can’t compete at the same level as their able-bodied peers.

This past April, Stella spoke at a TEDx conference in Sydney and offered the following similar thoughts:

I am not here to inspire you. I am here to tell you that we have been lied to about disability. We’ve been sold the lie that disability is a bad thing. Capital B, capital T. It’s a Bad Thing. And to live with disability makes you exceptional. It’s not a Bad Thing, and it doesn’t make you exceptional.

*   *   *

[T]here are a lot of [“inspirational”] images out there. You might have seen the one with the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fibre prosthetic legs. And these images – there are lots of them out there – they are what we call Inspiration Porn.

And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case we’re objectifying disabled people for the benefit of non-disabled people. The purpose of these images is to inspire you, to motivate you. So that we can look at them and think well, however bad my life is, it could be worse. I could be that person.

Sometimes I read things and receive a hard jolt of recognition when I realize the author is saying exactly what it is that I’ve always (unsuccessfully) tried to articulate. When I saw the above quote from Stella after learning of her death, I had one of those moments.

“Inspiration porn” is an intentionally provocative term. (I shudder to think what types of automated spam comments I’ll receive as a result of including the second word in this post.) But it’s dead on.

What has always made me so uncomfortable with people shouting, “You inspire me!” as they blast by on a race course (and yes – that has happened to me, many times) is that they don’t know me. I’m just a stranger who wears a prosthesis. Whatever they were trying to convey by saying these words, I’m left feeling uncomfortable. I’ve just become a symbol (my word), objectified (Stella’s). And, as Stella correctly pointed out in her TEDx talk, the complements seem especially unwarranted because we haven’t accomplished anything deserving of this level of praise:

I’ve lost count of the number of times that I’ve been approached, by strangers, wanting to tell me that they think I’m brave or inspirational. And this was long before my work had any kind of a public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name.

I’m not a world class runner and never have been. I’ve never set a world record. I won a single trophy in my racing life – first place, above-knee amputee division – back in the late 90’s. Sounds impressive, no? It’s much less noteworthy once you take into account the fact that I was the only AK participating. It didn’t matter whether I set a world record, personal best, or walked the whole thing using crutches – I was “winning” that race. I never looked at the trophy afterwards and said, “Man, that was an amazing achievement that deserves the admiration of others.” Rather, I felt a sense of pride in accomplishing something that I had set out to do: just finish. In other words, I felt like virtually every less-than-elite runner feels after completing a race.

In the same post I quoted from at the beginning of this post I finished with the following thought:

The future leaders of the [limb loss/disability] community won’t, in many cases, be the athletes whose accomplishments deservedly gain notoriety. … Instead, we’re going to need bridge builders, first-class communicators who can effectively highlight our common and fundamental humanity to link people together by emphasizing what we all share.

Stella Young was exactly that kind of communicator. She ended her TEDx talk with a turn of phrase I wish I had been smart enough to say myself:

Disability doesn’t make you exceptional, but questioning what you think you know about it does.

I’m sorry I never got to meet Stella Young. But I do feel like I met her.

a word that matters to me

a word that matters

Yes, it has been several weeks since my last post. I apologize for going dormant without explanation. Sometimes life just gets in the way and for the first time in the roughly 4 years I’ve been writing less is more, the thing that had to give was this blog.

Happily, however, I return to these e-pages recharged and ready to write again. So without further ado, let’s talk about why I now hate United Airlines.

*   *   *

Several weeks ago, I traveled to Newark Liberty Airport at 4 in the morning to catch a short flight up to Manchester New Hampshire to deliver a presentation later that day. Between waking up at 3 AM, seeing a lunar eclipse on the way to the airport, and navigating the somewhat confusing United Terminal to find the barely-there gates for small regional jets, the day had a distinctly surreal quality. After a brief delay for unspecified “mechanical issues,” I heard the announcement that “We will begin the boarding process shortly.”

When the gate agent picked up the microphone again, I quickly realized that words really matter. Or, more precisely, certain words really matter to me.

Those of you who have the courage to slog through these weekly diatribes know that I travel a lot for work. I’ve written in painstaking detail about America’s best and worst airports for amputees, about getting comfortable once on an airplane while wearing a prosthesis, and about my many fascinating interactions with TSA. In fact, let me digress for a moment to touch on that last topic.

I found myself in Orlando week before last and went through security there on my way back home. I climbed into the full body scanner, informed TSA personnel that I had a prosthetic leg, and then emerged for the mandatory pat-down process. The young agent felt my prosthesis and then swabbed it and my shoes. He went over to the machine that analyzes the swabs for suspicious substances and didn’t come back. I knew as soon as I saw him talking to another (older) agent that my sample had registered positive for plastique or some other dangerous substance. Having experienced a false positive before, I saw the next 45 minutes of my life slipping away in a polite but increasingly invasive series of inquiries that would result in my luggage being torn apart and me having to undergo a private screening with my friends at TSA watching.

The older agent approached me and told me what I already knew – positive test result. Figuring I had nothing to lose, I did the one thing I always tell people never to do: I told him what I wanted him to do. “Yeah, I could tell from the reaction that it came back positive,” I said. “Listen, this has happened to me before. There’s nothing on me that would trigger that result -”

“I know, I know,” the TSA agent said, interrupting me. “I’m sure it’s not you.”

Somewhat stunned by his less-than-suspicious attitude – and can we all agree that my unthreatening exterior notwithstanding, the one time we might expect TSA to properly view someone with suspicion is when a pat-down results in a  positive test result for something associated with explosives? – I forged onward.

“Listen, can you do me a favor and just do the pat-down again and then run the results through the other machine over there?” I asked, indicating another swab-testing device to our right. “When this happened before it was a problem with the machine.”

“Oh, that machine has been acting funny all day,” he replied. He then turned to the young agent who had patted me down: “Did you notice any anomalies when you did the pat-down?” The 20-something stared at him blankly for a moment, probably wondering what an anomaly was. He then tentatively shook his head.

“Nothing unusual?” the older agent asked again. “No – did the pat-down. Everything seemed normal,” the young agent replied. The older agent turned to me: “You’re free to go. Have a nice day.”

I stood there for half a second, in disbelief. I had tested positive for a suspicious substance; I had requested a follow-up test that would likely prove that one of the testing machines had an issue; but TSA just waved me through. The following thought actually flashed through my mind: “Should I insist on having them redo the swab in the other machine just on principle?” (Answer: No.) I found the whole experience upsetting, though not perhaps for the exact reasons you might think.

TSA security checkpoints are not, in my view, really about actual security. They’re about providing airline passengers with the illusion of security. I board planes all the time knowing that if there’s anyone really serious about taking the plane down, they can probably figure out a way to do it. But I still walk down that jetway with nary a concern in my mind because the official-looking process we all endure provides a psychological buffer between that terrifying reality and the fact that I’m willfully exposing myself to it. What TSA deprived me of in Orlando was that buffer; the senior agent destroyed the illusion of security that keeps my mind from going to Scary Places on Planes.

Anyway, if we now go back to Newark Liberty and my delayed flight, the gate agent began her spiel about pre-boarding. I have been on planes hundreds of times over the past few years and the typical pre-boarding litany goes something like this:

Anyone in a wheelchair or who needs extra time to get down the jetway can board when we announce pre-boarding. After that, we board by zone number. Please look at your boarding pass …”

But this United Airlines gate agent used a word I haven’t heard in at least my last 4 years of air travel. She said the following:

Any disabled [emphasis mine] passengers are eligible for pre-boarding.”

As I have discussed before, while I don’t have a handicapped sticker for my car and I don’t claim any of the other advantages of convenience that walking with a prosthesis could get me, the one perk I do exercise is pre-boarding airplanes. I do this for one simple reason: with overhead space becoming ever more crowded thanks to excessive baggage fees, I want to make sure my rolling suitcase stays with me, particularly since it contains various accoutrements (batteries, charger) for my prosthesis.

But now, on a sunny morning in New Jersey, to avail myself of the privilege of pre-boarding, I had to label myself “disabled” in order to climb on the plane before other passengers. And amazingly, that single word prevented me from doing it. I waited until the gate agent called my zone. I refused to pre-board because the gulf between what that word signifies to me and how I think of myself is so vast that I can’t bridge it in my mind.

In that moment I asked myself, “Aren’t I making way too big a deal about this? Does it really matter? Is there any difference between calling someone “disabled” and using the “anyone who needs extra time” euphemism for the same thing? And as much as my rational mind said, “No, get over it, it’s the same thing,” my emotional mind screamed, “Yes! There’s a huge [expletive deleted] difference!”

So I boarded the plane fourth from last. And I (childishly) felt proud as I climbed up the steps from the tarmac, my prosthesis lagging behind me, as if this silent stand against the tyranny of disability actually meant something.

halfway home

halfway home 09.23.14

As my birthday rolled around this year I found myself getting somewhat contemplative. Not one to eschew highly mechanical, self-serving literary devices to get words on the electronic page, I present you with my interview … of me. At the time, it seemed like the best way to get different thoughts out of my brain. So without further introduction …

*   *   * 

Me: How does it feel to have just turned 45?

Me: Thanks for asking. So thoughtful of you. Well, it’s a little unnerving. Barring some dramatic cracking of the genetic code in the relatively near future, this means that I’ve most likely teed off on the 10th hole of life. Despite my Buddhist leanings, I’ve not mastered my fear of death, so I’m not anxious to reach the proverbial clubhouse in the sky.

Me: I know exactly how you feel. I feel the same way too!

Me: Strange, isn’t it? Amazing how we could share that experience.

Me: As you look back on the “first half,” what really sticks out for you?

Me: Well, there are certain things I’d really like to do over. I regret telling my sister what my mom got her for Christmas back in 1975 in exchange for her disclosure of reciprocal information to me. Actually, to be more precise, I regret my own stupidity in then trying to slyly ask my mom directly for the completely random gift I knew she had already bought me. Apparently she could sense treachery much more acutely than I had ever supposed. That was not a happy day.

I wish I’d been more careful about not spilling grape juice. When I knocked that glass over in our all-white kitchen in New Haven, mom imposed a permanent embargo on grape juice. I really liked grape juice.

I also wish that I had taken a few years off to work after college. While everything ended up working out, going to law school with zero real world experience made no sense.

Me: Well, you focused largely on regrets with that answer. What about the good things?

Me: Much easier for me to focus on the negative, you know? Those things jump to mind so quickly. But overall, I’ve been ridiculously lucky.

Spent every summer of my childhood on a lake in Maine where I waterskied, swam, read books, and played games all day every day. Doesn’t get much better than that, you know?

Married my high school sweetheart. Three healthy kids who all do cool stuff and generally behave themselves – that’s cool.

And obviously, meeting a whole world of people and finding a life path that means something to me following my accident. While I know I’ll read this in 20 years and say, “What a naive goofball,” I feel like I have a decent sense of perspective and balance about what’s really important that I probably wouldn’t have had if I didn’t go through that.

Me: What are you most passionate about at this stage of your life?

Me: I’m obsessed with music. My tastes aren’t all that broad or particularly sophisticated, but I love the emotional release of great hard rock. Sadly, there aren’t that many great rock bands out there right now. I find myself largely waiting for the next release from Foo Fighters (coming soon!), Weezer (coming sooner!), and Green Day. The one band I absolutely love that I think is still largely under the radar in the U.S. is Biffy Clyro. Absolutely killer trio that doesn’t sound like anybody else out there. If you want to dive right into the heart of their best stuff, check out Only Revolutions, Opposites, and their live album from Wembley. And in a half-hearted effort to show that I listen to something other than ear-bleed-inducing noise, I just saw Jason Mraz live with Max. Holy. Crap. If you want to hear somebody absolutely sing their tail off with a voice of frightening purity, that’s your guy.

Music’s especially fun for me now because Max heads a band that’s really trying to build a local fan base. So to be in a position to (a) love music and (b) watch Max immerse himself in it is cool. In the last two years I’ve filled in twice at concerts. I wasn’t anywhere near as good as him, but both had those “I’ll remember this for the rest of my life” feelings attached to them.

Totally switching gears, I’m also fascinated by the concept of how stories – narratives – play such a powerful role in connecting to other people. We’re in the age of “big data” and we increasingly live in a world where we’re supposed to look at numbers to figure out what the next “logical” step is. Numbers can and should help guide us, but ultimately, I think that the big ideas that move people are built around compelling stories that impact us emotionally. I’m curious to see that tension continue to play out over the next 35-plus years (hopefully).

Me: What exactly do you do with a passion like, “narrative”? Some might argue it’s not the most practical thing to love if you’re not a professional author.

Me: The cool thing about that kind of interest is it can lead you anywhere. It plays an obvious role in this blog, but you can take it in so many directions.

For example, while I love music, it’s a pretty good bet that it won’t lead me someplace new at this stage of my life; it’s just something I enjoy. Storytelling, on the other hand, gives me a virtually unending universe in which I can play.

Me: That sounds disturbingly like the kind of vague platitude one would get from a liberal arts education.

Me: This is the source of an ongoing discussion I have with my father. He’s a liberal arts guy through and through. I spent many years after getting my college degree denigrating that world and saying it had no practical value. But the more I think about it and continue that conversation with him, the more I think that he’s more right than I was.

I guess it also depends on what your values are, right? I’ve usually been more attracted to interesting concepts than revenue-generating tasks. Liberal arts colleges focus on those interesting concepts – admittedly, sometimes to the point of useless abstraction – and encourage you to pursue them, to think in a creative way. Playing with those concepts and trying to integrate them into something that works, taking them from theory to implementation is what entertains and motivates me. To have anything that entertains and motivates me is a definite win, especially when I think about how directionless I felt for the first 5 or so years of my career.

Me: We’re already over my self-imposed word limit. Any closing thoughts?

Me: Nope. This was a useful exercise for me. Thanks!

Me: Me too.