Kudos to the Amputee Coalition for pulling off its first virtual National Conference with nary a glitch. The technology was tight, there was plenty of interactivity and face-to-face meeting and greeting, and the content was as relevant and valuable as ever. It was just about the best time we’ve ever had while staring into our laptop for three days straight—and that includes the Game of Thrones binge where we tried (and failed) to catch up to our friends who were a few seasons ahead of us.
If you happened to attend the conference last week, we’d love to hear your impressions—send us an email or ping us on Facebook or Instagram. If you weren’t able to join the festivities, here’s a handful of takeaways from our own experience. We’re just offering short summaries here, but some of these items will eventually turn into full-fledged articles for the magazine or the website. If there’s anything else regarding the conference you’d like more information about, you know where to find us.
1. We are all advocates.
“Advocacy” often gets conflated with “political activism.” But in session after session during the conference, we heard about amputees who are shaking things up and pushing reform in ways that don’t involve marching on the state capitol, filing a lawsuit, launching a podcast, or establishing a nonprofit.
When you ask your employer to support diversity/inclusion by staffing the human resources department with at least one disabled person, that’s advocacy. Ditto when you insist on responsive, patient-centered care from your insurer or medical provider; or when you nudge your general contractor to modify floors, doors, entryways, showers, counters, etc., so that your new (or remodeled) home works for a limb-different occupant. We heard from a conference attendee who’d asked a local retailer to carry a broader range of options in adaptive clothing, and another who informed their yoga instructor they were switching studios so they could work with someone specifically trained in yoga for amputees. Yet another person, who’s actively dating, told us about the mode, manner, and timing by which they disclose their limb difference to able-bodied dating partners.
These acts aren’t political per se, but they are absolutely examples of advocacy, which Merriam-Webster’s defines as “supporting or promoting the interests of a cause or group.” In each case, the amputee not only advances an individual agenda but also confidently, unapologetically asserts the value of people with limb difference.
Vignettes like these came up again and again during the conference, and they all exemplified this year’s theme: “The Power of You.” Every small act of self-advocacy helps raise awareness, influence attitudes, and promote understanding. Add them all together, and they carry as much weight (maybe more) as any petition drive or letter-writing campaign.
2. It’s time to get educated about osseointegration.
Osseointegration (or OI) has been out there on the horizon for years, blurry and indistinct. It’s finally starting to move into the foreground and come into sharper focus. Like many emerging health care technologies, it’s exciting and full of potential. Over time, it may well live up to its promise to transform the way we use prosthetic devices. But we’re not quite there yet.
We attended two sessions about this procedure and learned an awful lot about it. But the conference still left us with nearly as many questions as answers The data profile for osseointegration is relatively slim, making it hard to get a clear read on the risks and rewards. Moreover, the cost-benefit calculation varies widely from one individual to the next.
For that reason, we think the individual stories of amputees who’ve undergone the procedure may be the most valuable source of information currently available about osseointegration (or OI). This week’s newsletter includes an item about one amputee’s experience with osseointegration. We’ll be running more articles like it in the coming weeks, while also explaining the different types of osseointegration and examining the key factors you should consider.
One way or another, we all need to get educated about osseointegration, because it’s going to become more common—and more aggressively marketed—over the next few years.
3. There’s a lot we can (and need to) learn from Millennial and Gen Z amputees.
We weren’t able to sit in on the Thursday afternoon Young Adults Roundtable, but afterward we direct-messaged the following question to one of the session’s facilitators, Samuel Rossiello: “Do you think 20somethings have a unique sensibility about limb loss that distinguishes you from amputees of the Gen X / Baby Boom generations?”
We thought it was a pretty insightful question and were rather proud of how it reflected our own youthful outlook. Indeed, we felt about 25 years younger just for having asked it. But after hanging out on Zoom with the 27-year-old Rossiello for over an hour, we discovered that maybe our blood wasn’t as fresh as we’d thought—that the answer to our question is yes, duh, younger amputees have a distinctive point of view. And it’s one we need to listen to.
One of this mindset’s chief characteristics seems to be an affinity for systems-level thinking. According to Rossiello’s informal report-out from the Young Adults Roundtable, his generation of limb-different adults tends to tackle problems at the foundation rather than the facade. To cite one example: Rossiello talked of streamlining our data infrastructure using blockchain technology, which would all but eliminate the mind-numbing paperwork hassles that come with limb difference. In a single stroke, this reform would make transactions with every organization—from prosthetists, insurers, and surgeons to employers, grad school registrars, and government agencies—more accurate and less aggravating.
A second broad stroke in our brief sketch of the millennial amputee mind: technological creativity and imagination. This generation embraces tech innovation as a participatory endeavor, in which designers and consumers shape new technology collaboratively. 3D-printed prostheses offer one example of this trend, enabling amputees to (in essence) co-create the devices they use. Telehealth platforms may well emerge as another iteration. The same principle could eventually yield a bounty of amputee-friendly products and services in transportation, athletics, computing, fashion, health care, travel, you name it.
There’s a lot more we could discuss, but we’d still come nowhere close to capturing the full spectrum of views from this cohort, which is larger, better educated, and more demographically diverse than the Baby Boom. Suffice to say that younger amputees aren’t tiptoeing into adulthood. They’re striding in with a purpose, looking for ways to make an impact.
4. COVID will pass, but its effects will be permanent—for better and for worse.
Nearly six months into this pandemic, the toll of COVID-19 keeps growing. We caught a glimpse of that during Thursday’s plenary session, titled “Navigating Life During the Pandemic.” In a real-time poll taken during the session, two-thirds of respondents said they’ve been challenged by social isolation during the pandemic. Roughly a third have had to deal with financial insecurity, and around 20 percent have grappled with depression. Only 7 percent reported encountering no significant challenges because of COVID.
Many of those impacts won’t magically disappear when the pandemic has finally run its course. People have suffered losses they’ll never recover—a job or a business, a nest egg, a piece of their education, the life of a loved one. A good chunk of the conference focused on how to cope with the hardships of 2020 and build strategies for moving forward.
But John Register, the Amputee Coalition board member who chaired the plenary session, reiterated something we’ve heard from Patrick Quinn, Lacey Henderson, and numerous other sources in the last six months: Few groups of people are better equipped than amputees to adapt to changed circumstances and turn adversity into opportunity.
“Every time we go into something that we might perceive as a negative,” Register said, “there’s always a rise on the other side. We just have to look for the opportunities despite the obstacles.”
First and foremost, there’s telehealth. Few prosthetists had the ability to offer remote care when COVID reached U.S. shores, but out of necessity the industry rapidly ramped up capacity—to the great benefit of amputees. Those who have mobility challenges or live far away from their prosthetist can now connect more easily and more frequently with their providers. That’s a permanent improvement in prosthetic care, and it wouldn’t have happened nearly as quickly if not for the pandemic.
Along the same lines, limb-loss support groups, amputee yoga classes, physical therapists, and various others have gained the ability to connect remotely, opening the door to new participants who, for one reason or another, were unable or disinclined to attend in-person gatherings. The National Conference itself offered strong evidence of that: Nearly 80 percent of this year’s registrants were limb-different individuals and family members, the highest total ever recorded. Digital connections enabled more amputees than ever to come together. We wouldn’t be at all surprised if virtual sessions become a permanent feature of the National Conference.
As the plenary session concluded, Register spelled out a core amputee trait—resilience—and noted that the word “silence” is nested within it. Let the silence of social distance fuel your resilience, he urged. Listen to yourself. Rewrite your own story. “There’s some momentum that can be generated from actually being away from each other,” Register said. “COVID can give us a chance to push ahead.”