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Jill Pantozzi: from the Margins to Mainstream UNITED SPINAL ASSOCIATION’S Body Image Good Sleep Comparing Function life beyond wheels GEEK MEDIA EDITOR Jill Pantozzi: From the Margins to Mainstream newmobility.com DEC 2019 $4 for Pressure Injuries SofTech Cushion NOW FEATURING Bluetooth Wireless Technology Shown without included cover HCPCS code E2609 AquilaCorp.com 8667829658 ADVERTORIAL “ I feel more like I did before my accident – an independent 26-year-old man” Thomas*, catheter user After his accident, Thomas had to rely on other people to help him catheterize. With SpeediCath® Compact Set, he’s gotten back his independence.** Once his initial rehab was over, It’s now the only product he uses Thomas, 26, was determined to get when catheterizing himself and out and about and meet friends. The Thomas is particularly happy about its only issue was his injury meant a discreet size and the hydrophilic caregiver, friend, or relative had to coating , which makes the catheter help him catheterize. He explains: “I pre-lubricated. He goes on: “The couldn’t be spontaneous – it was like reason it’s so much easier is there are an anchor keeping me down.” so few steps involved – you don’t have to lubricate it, or push through the From the start, Thomas preferred bag. The catheter’s already out so intermittent catheters and felt they you just put it right in and you’re good offered more control than an to go.” indwelling product. But the problem was finding one he could open “It’s easier to keep more of them in a himself. He adds: “My occupa tional bag, and they’re easier to handle and therapist suggested SpeediCath use. It goes into the bladder easier Compact Set, but I couldn’t open it at and with less resistance, and the About SpeediCath Compact Set first. But I tried with the Dycem handles on the bag are useful.” gripper and I could do it. It was SpeediCath Compact Set is an all- exciting – to actually have it work For Thomas, just 15 months after his in-one catheter and bag solution. Rated easy to use by 88% of and to know that I could do it made injury, his focus is still firmly on his users1, SpeediCath Compact Set is me happy.” rehab. He’s taking part in the Activity- designed for everyday use both in Based Loco motor Exercise (ABLE) and out of the home. Thomas got his driver’s license around program close to his home in the same time as he started using Minnesota and is beginning to think The innovative design means the SpeediCath Compact Set and he about looking for his own apartment. catheter can easily be kept in a identifies that as the time things started And with SpeediCath Compact Set, he pocket or handbag. to turn around for him on a personal has found a product that is playing a level. He continues: “Now I don’t have key role in improving his quality of life. Find out more and get a to ask my friends or family to take time He concludes: “Now I can do things on FREE sample at out of their day to come and help me. I my own and take care of myself, feel more like I did before – an which is a good feeling.” www.coloplast.us/newmobility independent 26-year-old man.” or call 1-855-385-3991 1 Product evaluation of SpeediCath® Compact Set, response from 70 HCPs and 550 end-users, Feb. to April 2013. SpeediCath Compact Set is available by * Thomas is a SpeediCath® Compact Set user who has received compensation from Coloplast to provide this information. prescription only. ** Individual results may vary. Coloplast Corp. Minneapolis, MN 55411 / 1-800-533-0464 www.coloplast.us The Coloplast logo is a registered trademark of Coloplast A/S. © 2019 Coloplast Corp. All rights reserved. PM-09161 10.19 CONTENTSIssue 315 - December 2019 life beyond wheels COVER STORY QUEEN OF THE GEEKS As the deputy editor for io9, one of the web’s leading geek culture sites, Jill Pantozzi is uniquely positioned to influence the mainstream discourse about comics, sci-fi, fantasy and more. As an outspoken woman with a disability, Pantozzi provides a perspective not often heard or desired by some of the 24 community’s less progressive voices. AARON BROVERMAN profiles Pantozzi and reports on her efforts to fight trolls and change the conversation around how women and people with disabilities fit into geek culture. Cover and Contents Photos by Savannah Lauren FEATURES DEPARTMENTS 4 BULLY PULPIT 17 COMPARING YOURSELF TO OTHERS 5 BEHIND THE STORIES We can learn so much by finding parallels with people who have similar disabilities, but no two injuries are the same. BROOK 6 SHARE MCCALL writes that sometimes in trying to find similarities, we 8 NEWS lose sight of our own unique strengths. 12 LIVE WELL 14 HOW WE ROLL 30 SLEEP STRUGGLES Spasms, sleep apnea, pain and positioning are but a few of the 38 PARA/MEDIC many issues standing between wheelchair users and a good night’s 40 OUTDOOR TRACKS sleep. ALEX GHENIS looks for solutions. 42 EVERYDAY ETHICS 44 ERVIN 33 I WILL NEVER WEAR A SWEATSUIT 47 CLASSIFIEDS SHERI DENKENSOHN-TROTT writes about the long road to accepting and embracing a new body image after SCI. 48 LAST WORD life beyond wheels BULLYBy Ian PULPITRuder NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION IT’S NOT SCI, IT’S HBO PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS This fall HBO debuted a new documenta- In light of his regained function, Ba- ry called Any One of Us that follows moun- sagoitia’s decision to focus so intently on tain biking star Paul Basagoitia in the walking again makes sense. But the movie’s EDITORIAL wake of a 2015 bike crash that left him heavy focus on his progress, combined PUBLISHER: JEAN DOBBS paralyzed. Using first person footage cap- with some melodramatic editing and a few tured by Basagoitia and short interview interviewees who come across as single- EXECUTIVE EDITOR: JOSIE BYZEK segments with an array of familiar and mindedly obsessed with getting back on EDITOR: IAN RUDER unfamiliar SCI personalities, the movie their feet, comes with a cost. ASSOCIATE EDITOR: SETH MCBRIDE aims to pull back the curtain and allow the EDITOR EMERITUS: TIM GILMER millions of people who tune in to HBO for SENIOR CORRESPONDENT: BOB VOGEL entertainment escapism a glimpse of the “While Any One of Us is realities of spinal cord injury. As a sucker for a good documentary, not without its strengths, I CUSTOMER SERVICE and someone with an obvious interest in couldn’t help but roll away Toll-free 800/404-2898, ext. 7203 anything and everything SCI-related, I was stoked to dig in, even if the movie poster’s feeling like it had missed an lone image — Basagoitia standing with opportunity.” ADVERTISING SALES hand crutches in a desert and looking at his 718/803-3782 reflection in an oasis — had me a little leery. Intended or not, these decisions have MANAGER, CORPORATE RELATIONS: If 30 years of NEW MOBILITY have proven the effect of reinforcing the idea that in MEGAN LEE, EXT. 7253 anything, it’s that there is much more to addition to the actual physical damage, a AD MATERIALS: DEANNA FIKE, EXT. 7250 life after SCI than trying to walk again. That’s not to downplay the importance of spinal cord injury leaves us broken people, PRODUCTION walking — it’s huge. Most of us would be and walking is the sole ticket to health and a truly happy life. PRODUCTION MANAGER: DEANNA FIKE thrilled to wake up tomorrow and go for a leisurely stroll in the park, but working to It’s disappointing because the antidote CIRCULATION walk again is only a piece of a much more to that message is right there on screen in complicated puzzle of recovery. testimonials from the spinal-cord-injured CIRCULATION MANAGER: Yet all too often, media portrayals get talking heads interspersed throughout. BEVERLY SMITH so lost in the easy (and ableist) “will he/she With years of experience under their CIRCULATION COORDINATOR: belts, former Push Girl Chelsie Hill and MARIA KURTZ walk again” narrative that they forget the other pieces and leave their audience with surfer Jessie Billauer of Life Rolls On are POSTMASTER: Send address changes to New an incomplete picture. two of the many wheelers who eloquently Mobility, 120-34 Queens Blvd, #320, Kew Gardens While Any One of Us is not without talk about their experiences after SCI NY 11415. Subscription rates: $27.95/year; $35.95/ and move the narrative beyond physical year in Canada; $67.95/year international via its strengths, most notably Basagoitia’s airmail. New Mobility (ISSN 1086-4741), Volume willingness to bare himself both physi- recovery and walking. 30, Issue 315, is published monthly by United cally and emotionally on camera and the The short clips of Hill dancing with the Spinal Association, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. Copyright 2019, all rights insights of some of the interviewees, I Rollettes and Billauer riding a wave tease reserved. Reproduction without permission of any couldn’t help but roll away feeling like it the wider world of SCI that so many of material contained herein is strictly prohibited. We had missed an opportunity. us inhabit — a more complex and, I would welcome comments; we reserve the right to edit submissions. Since the poster shows Basagoitia stand- argue, more interesting world than the one Periodicals postage paid at Flushing, NY ing, I’m not spoiling anything by saying he that usually makes it onto the silver screen.
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