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 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 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.