For the last 13 years, NEW MOBILITY readers have counted on Tiffiny Carlson for the latest scoop on interesting people, devices and happenings in the world of spinal cord injury. Through her monthly SCI Life column, she has introduced hundreds of such stories to a wider audience, helping many survivors share resources and messages of resilience.
When not writing for us, Carlson has been a prolific commentator on all things SCI on a number of prominent blogs and websites. She currently works as the executive director of SPINALpedia, one of the leading websites for people with SCI to share videos and stories. She has also been a fierce advocate for SCI research. In 2016, the Morton Paralysis Fund honored her for her work.
But like all good things, SCI Life will come to an end; this month’s issue features her last column. This doesn’t mean you won’t be seeing any more of Carlson — we will continue to showcase her writing — but it does seem like a good time to catch up with her and recognize her 157 NM columns, as well as the changes that have occurred in the SCI community during that period.
NEW MOBILITY: Looking back on all the SCI Life columns you’ve written, are there any stories or individuals that stand out the most in your memory?
Tiffiny Carlson: Every column was crafted from the heart. I’m always trying to think, “What would other people like me like to read about?” and I think I’ve done a pretty good job. No one story stands out, but I hope every product or shout-out to a great site helped someone’s life.
NM: What about a person — do any of the people you’ve featured hold a special place in your mind?
TC: Everyone is cool. It’s great seeing people get to even better places in life after I’ve profiled them. Like Bre Garza, who was just in high school when I profiled her. She now has her bachelor’s degree and has grown into a beautiful woman.
NM: You’ve covered a lot of future tech, or cool products that were promised, but maybe not delivered. Do you have a fav?
TC: Scewo stair-climbing chair is cool. ActiveHands is a great addition to quad life for others. The wheelchair-accessible cars are cute, too. There are a lot of great inventions being created by SCIers especially. I love all the crowdfunded products being developed, too. The Sixth Digit, a tiny metal peg made for quads, is definitely one of my favs.
NM: How do you think the lives of people with SCI have changed, if at all, in the years you’ve been writing SCI Life?
TC: There are more products than ever before, and the strides in technology are so huge. Smartphones, tablets, WiFi … it’s insane and so great to see. All of the blogs and how-to videos by people with SCI have become a great resource, and they are so accessible.
NM: You’ve cultivated a pretty robust presence online. How do you think the relevance of social media has helped or hurt the wheelchair-using community?
TC: It’s fabulous. Thanks to smartphones, everyone can blog and share their ideas and tips now. It’s incredible. It makes it easier for everyone to connect and helps many newbies to not feel alone. At the same time, stalkers and devotees can use it, so it’s not all good in my opinion. Oversharing can be dangerous, so use social media thoughtfully, not for vanity. I have a stalker because of a mistake I made nine years ago.
NM: What about your own life, how has it changed?
TC: It hasn’t changed much. I’m just an old woman now — almost 40. But I might adopt in my 40s.
NM: You wear a lot of hats. Tell me about where else we can find your writing and work.
TC: I love helping the community as a writer and blogger wherever I can, and have done so at length with orgs like Disaboom, Lovebyrd, Easystand, Huffington Post, Ican, SPINALpedia and others. With SPINALpedia, I help the SCI community in the form of blogs and organizing events, social media and more as their executive director. It’s a rare opportunity to really impact the SCI community. Working for nonprofits is great for people with SCI. We can really work for a cause.
NM: What excites you the most about everything that is going on around SCI today?
TC: I think the research keeps moving along, but I definitely don’t think I will live to see anything concrete in terms of full-on walking “like normal” in my life. I think an actual SCI “cure” is still 20-30 years away, but I still believe in advocating hardcore for research. I wish a longtime quad like me with no money could take part in trials, because I’d be down.
NM: If you could meet one person from the wheelchair community, who would it be?
TC: Chuck Close, the quad painter. He is so cool.
NM: What’s the top accessible destination you’d like to check out?
TC: Spain, maybe. Barcelona might be nice. I heard the ‘92 Olympics made it very wheelchair-friendly. My dad was just there too and was shocked by its beauty and how nice the people are.
NM: What about your favorite accessible place to visit?
TC: My van, just driving is my favorite thing to do. After my last trip when my flight was canceled and my chair broke, I decided air travel is too stressful.
NM: Favorite depiction of SCI in a movie or TV show?
TC: Macaulay Culkin in Saved.
NM: Assistive tech or device you can’t live without?
TC: My power chair. Really! My personal mantra is “don’t hate the wheelchair; hate the injury.” My wheelchair is my best friend. No one else will carry my 140-pound ass all day except my wheelchair, and that’s the truth.
Tiffiny Carlson’s unerring knack for finding what is coming next and who’s who in the wheelchair world is perhaps best experienced by browsing her blog, Spin 2.0, found at www.newmobility.com/category/blogs/spin/. It’s where NEW MOBILITY first heard about fashion icon Jillian Mercado, “kite-chairing,” (being pulled along on a windy day by kite) and hacks like how to make a Kinect wheelchair-accessible.
So many everyday events turn into adventures for Carlson, even cooking. “I love to bake, but holy cow do my hands fight me! I don’t let this stop me, though. Fresh baked cookies, pineapple upside-down cake, rhubarb crisp … with adapted baking tools, I can make it all,” she enthused in “My Favorite Baking Tools.” Oster’s Extra Large Toaster Oven is first on her list, if you’re curious. “Nothing beats being able to easily pull out my cookie sheet or pan without having to bend over. I use Oster’s Extra Large Toaster Oven, and it’s the best $99 I ever spent. Cakes, cookies, pies, it bakes it all.”
The best of Spin 2.0 often ended up in SCI Life (think Sixth Digit), but some topics can’t lend themselves well to tiny formatted boxes. Spin let her delve into weightier, often more personal subjects. Her Project Walk Diaries are the best example of this.
Right as the SCI-geared gyms were beginning to become a thing, Project Walk opened one in Minneapolis and Carlson wandered over to see what it was all about, and brought her readers along with her. “Was I walking again? Heck no, but it sure felt good to be upright in a way that didn’t require being in a metal frame,” she wrote, after a session. “I guess you can say it felt more natural, as much as it can when you’re paralyzed and have two people helping you stand up, that is. And I can’t wait to do it again.”
Even as SCI Life winds down, as did Spin 2.0, Carlson’s voice will still be included in our magazine. We look forward to seeing what she does next and trust it will be written with great enthusiasm.