Is It Time To Replace Your Cushion?

February 12, 2013 by  
Filed under Guest Bloggers, ROHO Community News, ROHO Products

Guest blog post by Bob Vogel

“How do I know when it’s time to replace my cushion?” This is an important question that frequently comes up at consumer shows, a question that has a several answers.

The first and foremost reason to replace your cushion is if you have a change of medical condition that effects your skin such as weight gain, weight loss or if the cushion you are on is showing signs that it isn’t doing an effective job protecting your skin— if you start to notice your skin remaining red after a long day of sitting–insurance should pay for a new cushion with the proper seating evaluation.

This is why it is crucial to check the skin on your butt with a mirror every evening and morning—taking a few moments to do a mirror-skin check gives you the best odds of catching a potential skin problem early, before it progresses into a serious pressure ulcer.  If you start seeing a red area at the end of the day, it is important to tell your doctor and ask for a referral for an evaluation with a seating clinician—as soon as possible. Don’t wait!

This recently happened to me.  I’m 52 and in my 27th year as a T10 paraplegic and except for one tiny pressure ulcer right out of rehab I’ve had healthy skin.  But as we age our skin gets thinner. Lately I’ve noticed some redness on my left ischium during my evening mirror checks. I have a pelvic obliquity; my left ischium is slightly lower than my right. I tried readjusting the pressure in my cushion and doing extra weight shifts but the redness would return by evening. Although the redness blanched—turned white when I pushed on it with a finger and would disappear within 30 minutes– I knew I shouldn’t have any redness at all.

I took this very seriously. I know way too many wheelers that “never have skin issues” and felt they didn’t need to do mirror skin checks anymore.  Then somewhere 15 or more years after their injury they end up with a pressure ulcer, skin flap surgery and 3-month hospital stay.

The usual protocol in my case would be to phone my physician right away and get a referral to the first possible seating clinic. AND have the doctor emphasize, “there is compromised skin”.  This should get a timely seating clinic appointment because a new, properly fitted cushion is much cheaper than hospitalization and a skin flap.   If the seating clinic determined the cushion I was currently on was not adequate and I needed a new cushion, I would be sure to have them write that my skin is “compromised” on the Letter Of Medical Necessity.  As always it is important that the Letter Of Medical Necessity and cushion prescription say the exact seating needs; for example, ROHO® HIGH PROFILE® Single Compartment Cushion (4-inch).

I went through this once—26 years ago—with a tiny pressure ulcer due to the wrong cushion.  Because of the pressure ulcer I got a timely appointment at a seating clinic and Medicaid quickly approved payment for a ROHO cushion–an upgrade from the inadequate memory foam cushion on which I had been sent home from rehab.

In my current instance I was fortunate that I know a physical therapist that is an expert in seating and positioning. She took all of my seating information into account and suggested I switch to a ROHO® QUADTRO SELECT® HIGH PROFILE® Cushion, that has deeper cells than the ROHO QUADTRO SELECT that I was currently on. This would give me deeper immersion sinking into the cushion to provide more support in the areas surrounding my ischiums, and allow me additional depth to adjust the cushion so the left rear quadrant is significantly lower than the right without bottoming out—thus taking weight off of my ischium.  A disclaimer: Since I am in the ROHO elite program I didn’t have to get insurance approval.  Several weeks ago I received my ROHO HIGH PROFILE QUADTRO SELECT.  Evening mirror skin checks reveal success!  At the end of a long day my skin looks fine!

Another important reason to get a new cushion is time.  Every brand, make and model of cushion will break down over time. When this happens the cushion no longer supports and protects your skin the way it was designed—putting you at risk of a pressure ulcer.  Even if the cushion you are using is working fine, it is important to replace it before it starts to break down!

How often funding sources will reimburse a new cushion varies from one type of insurance to another.

In order to get a new cushion before your current cushion breaks down it is important that you are the squeaky wheel and ask about getting a replacement cushion. The way to do this is contact your local DME (durable medical equipment) supplier and tell them you need a new cushion. They will be happy to guide you through the step by step process of getting a new cushion, based on your seating needs, including gathering your insurance information to let you know how often your insurance will reimburse a new cushion.

If you don’t already have a working relationship with a DME supplier, locating one is your next step. ROHO makes this easy. To find a DME supplier go to www.therohogroup.com/where_to_buy.jsp and click on Buy from an Authorized Retailer Near You.

You can find Medicare DME provider(s) in your area by going to www.medicare.gov. On the main page pull down Resource Locator, scroll down to Medicare Supplier Directory, from there, type in your zip code and click submit. On the next page check Wheelchair Seating/Cushions and hit view results. The “default” setting on View Results is 10 miles — to find more DME supplier options it is helpful to expand the View All Suppliers Within (on the right side of the page) to a larger distance in order to find a Medicare DME provider that is also a ROHO authorized retailer.

It’s much better to be a proactive “squeaky wheel” and work on getting a replacement cushion while the cushion you are sitting on still provides proper support for your skin than waiting too long and risk developing a pressure ulcer because your cushion gets so old it is breaking down.  Plus, getting a new cushion while your old cushion still provides proper support means you now have a back up cushion—one you can use while cleaning your new cushion and/or to use on the seat of your car for extra skin protection while driving.  If your cushion is getting replaced, be sure that all of your paperwork specifies the exact manufacturer, model and size of the cushion you were fitted for.

Keep doing daily mirror skin checks and replace your cushion before it breaks down.  Stay healthy my friends!

 

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Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

Monica Bascio Balances Family Life and Career in Her Quest for Paralympic Gold in London

July 19, 2012 by  
Filed under Feature Story, Guest Bloggers, Lifestyle, Sports

Monica Bascio on her way to victory in a hand cycling road race.Guest blog post by Bob Vogel

Monica Bascio will be representing the U.S. in handcycling time trial and road race events in the upcoming 2012 Paralympic Games in London that kicks off in six weeks. For Bascio, 42, handcycling in the Paralympics is the culmination of a 14-year journey of dedication and hard work. Bascio is a natural athlete and extremely competitive, however sports is just one aspect of her multi-faceted life—she is the proud mom of her 5-year-old son, Henry, dedicated wife with her husband, Ian, and an Occupational Therapist specializing in geriatrics.

Bascio became a T12 paraplegic in 1992 as a result of a skiing accident.  Following SCI rehab she pursued a degree in Occupational Therapy.  She got her first handcycle in 1997 as a way to stay fit and enjoy the outdoors with Ian, a former bike racer, and quickly developed a passion for the sport.

Bascio started handcycle racing in 1998 and was ranked the number one handcyclist in the world over the next five years, winning more that 30 handcycle races. In 2004 handcycling made its debut as a Paralympic sport in Athens, Greece, but unfortunately there was no women’s division–a huge disappointment for Bascio, who was arguably the top woman handcyclist at the time.

Undeterred, Bascio decided to try adaptive cross-country skiing (sit skiing). Once again her natural athletic ability, competitive nature and work ethic enabled her to quickly rise through the competitive ranks earning her a six-year run on the U.S. ski team where she represented the U.S. as a cross-country sit skier in the 2006 and 2010 Paralympic Winter Games.

In the off-season Bascio continued handcycling as a form of cross-training.

Bascio took much of 2007 off from competing in order to embark on a new adventure. On July 8 of that year, she gave birth to her son Henry and she and Ian proudly adapted to the world of parenthood.  By early 2008 Bascio was ready to start competing and the family created a balance of parenting, work and training that would enable Bascio to get back into ski racing.

Around the same time, Bascio’s dream of Paralympic handcycling seemed like it would come to fruition when it was announced that women’s handcycling would become an event at the 1998 summer Paralympics in Beijing.  Unfortunately in March she broke her tibia and fibula transferring out of a team van while at cross country race in Norway. Although her leg healed in time for her to compete in the Paralympic trials, she didn’t have enough time to get back into racing form and didn’t make the team.

After competing in the 2010 winter Paralympics in Vancouver, Bascio considered retiring from competition, but a rule change added an H3 class to the Paralympics. This meant she would be racing against athletes with similar function rather than an open class. Bascio quickly set her sights on the London Paralympics with the family agreeing to take it “One race at a time.”

Motherhood, family life, work and training at an elite level requires amazing balance and dedication. “On a typical day I’m up at 6:00am to put in a solid 3-hour workout on my handcycle. On some days it is a 4-hour workout.  In the meantime, Ian makes breakfast for Henry and gets him ready for the day.”  She says.  “By around 10:00am, I’m home. Ian heads to the office and I take over watching Henry and maintaining the housework.  We take turns making dinners.  Ian and I chuckle because most of our dinner conversation revolves around my training.”  Ian watches Henry on the days Bascio is working as an OT.  “The key to making it all work is we support each other, communicate and work together to balance the challenges of work, raising Henry and training for the Paralympics.”

Bascio says that although the family enjoys the hectic schedule, it can be draining.  “Ian cracks up because although I hardly ever watch TV, I love watching ‘The Biggest Looser’ (a show about weight-loss ‘boot camp’). She says. “I look at the show and think, ‘If all I had to do was stay at a campus and have a coach and do workouts all day it would be like a vacation!’”

Bascio says the other challenge in balancing family life with competition is the travel schedule. “My last trip in June was pretty crazy.  I was racing at a World Cup race in Italy for two weeks, flew back to the States, was home for two weeks, then flew to Spain to race in a World Cup race.” She says.

“Then I flew to London for 36 hours to ride the race course, then flew straight to the Nationals in Augusta, GA, and of course the plane was delayed so I didn’t get in until about 9:00pm and met Ian and Henry and Henry hadn’t seen me in so long and wanted to go swimming at the pool at the hotel, and I still had to put my bike together—then had a race the next day.”

Bascio has been an avid ROHO user for the past 15 years.  “I love ROHOs” says Bascio. “When I was first injured 20 years ago, the equipment vendor I had in rehab had the ‘old school’ mentality that a ROHO cushion was for people with higher level injuries or people that already had problems with skin breakdown so they ordered a gel cushion. I didn’t like it because it was heavy and I didn’t want to take the time to massage the gel the way I was supposed to.  When it was time to order my next cushion I switched to a ROHO and I’ve been using them ever since.”

As an OT and an athlete, Bascio is aware of how quickly a pressure ulcer can happen. “I know wheelchair users that have had pressure ulcers and I’ve seen what they go through and the great length of time it takes to heal.  I’m not willing to take that risk.” she says. “When I broke my leg it cost me a spot on the Paralympics and a pressure ulcer can take much longer to heal.  I’m always sitting on a ROHO.  I use a ROHO QUADTRO SELECT LOW PROFILE on my chair and I sit on a LTV ROHO Seat Cushion in the car.  I keep an ADAPTOR Pad in my backpack for travel and use it in the tub or shower bench, or when I’m sitting on the side of a pool or sitting on the ground working on my bike.  And of course I sit on my QUADTRO SELECT on long plane flights.”

Ian and Henry, along with other members of Bascio’s family will be in London to cheer for Bascio.  “Henry gets to travel to a lot of competitions.  He has become a member of the handcycling community.  Everybody knows him and a lot of the other athletes have kids so he has friends to play with. He has his own frequent flyer card and is already on his 2nd passport.”

Says Bascio.  Proof of the saying, “The family that plays together, stays together.”race.

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Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

Dan Buchanan, International Airshow Performer, Mentor, ROHO User

Guest blog post by Bob Vogel

Dan Buchanan. Photo courtesy of Dan Buchanan.

Friends and mentors are priceless. In 1985, while still coming to grips with my spinal cord injury in the rehab hospital, a fellow hang-glider pilot named, Dan Buchanan, who is also a T8 complete para came to visit me. Dan’s visit helped me a great deal, mainly because in between dolling out tidbits of SCI survival wisdom he kept looking out the window. Within a short period of time he said “Man, the weather is looking really good for flying, so I gotta go. I’ll catch you later.” This was the perfect thing to say! The light went on! Dan’s life revolves around flying hang gliders! Paralysis wasn’t even on the radar screen.

Dan helped show me the ropes of thriving with SCI, everything from advice in ordering equipment: “Order the smallest chair you can fit into, and tell your therapist you want a ROHO cushion,” to helping me rig my hang glider and get back in the air. Over time we’ve become close friends and shared many adventures.

As I said, Dan’s life revolves around in flying hang gliders, so much so that in 1989 he left a successful career in mechanical engineering to pursue a path as a professional airshow hang glider pilot.

Dan devoted years into honing his routines, methodically developing, refining, and marketing his airshow performances. These days he is one of the most sought after air-show acts in on the circuit!

One of the many cool things about Dan’s airshow act is that it enables the general public to see beyond a wheelchair. His chair has nothing to do with the act. That is, until the finale.

To get airborne, Dan launches from a moving trailer driving down the runway at 35 mph. Once he is in the air, a winch on the trailer pays out line as Dan steadily tow-climbs to altitude as the trailer is towed down the runway. He has long colorful streamers and smoke from canisters trailing his glider. He has crafted several different routines, from an opening act flying with an American flag while the Star Spangle Banner plays, to night routines complete with lights and bright pyrotechnics.

Dan’s day show is a comedy act where he “mistakenly” launches during the middle of another performers aerobatic routine. The announcer, the other performer and Dan all exchange banter on the PA and “pretend” it is a mistake, but Dan refuses to leave the sky. Soon a police car is on the ground chasing the tow trailer and the aerobatic airplane tries to chase Dan out of the sky by buzzing his hang glider. Dan tries to chase the plane away by shooting special effects rockets and pyrotechnics, his version of a “3rd world warbird impression.” At this point Dan’s altitude is about 1,500 feet and he releases the tow rope and the announcer introduces him. He gently swoops, turns and glides down and rolls to a stop front of the audience.

An aerobatic airplane tries to "chase" Dan Buchanan out of the sky during airshow performance. Photo courtesy of Dan Buchanan.

This is when the announcer explains that Dan is a paraplegic, while overhead a helicopter delivers Dan’s wheelchair which is dangling from a cable. The aerobatic plane lands and tows Dan in his wheelchair over to the crowd where Dan shakes hands, answers questions and signs autographs.

Each year during the airshow season  —  April through October  —  Dan’s performances are seen by millions of people around the world as he travels to over 25 cities. To get from show to show requires driving more than 45,000 miles each summer. It is not uncommon for Dan to drive thousands of miles in a single week to get from one show to the next.

In addition to North America, Dan has performed in Australia, Japan, Thailand, El Salvador, The United Arab Emirates, Canada and Mexico  —  an exhausting travel schedule requiring lots of windshield time as well as sitting on very long commercial flights often across many time zones.

In December, Dan was honored by his peers on the airshow circuit when he received the Art Scholl Award for Showmanship at the International Council of Airshows (ICAS) convention banquet  —  one of the highest honors an airshow pilot can receive.

Last week I was fortunate enough to catch up with Dan via phone while he was doing a “short” 700-mile commute from North Carolina to Tennessee for his next show.

Bob Vogel (BV): Congratulations on the Art Scholl Award. Did you know it was coming?

Dan Buchanan (DB): No I didn’t. It was a complete surprise and a great honor  —  also a bit embarrassing. All the other pilots are flying planes, jets and helicopters that cost hundreds of thousands, if not millions of dollars, and here I am flying a hang glider that cost around six-thousand dollars. But mainly it was a great honor.

BV: So I’m trying to do the math — how old are you and how many years have you been injured?

DB: I’m 56-years-old and this is my 31st year as a para.

BV: Wow! I’m 52 and 27 years post injury. It seems to me having a SCI ages us in dog years, how do you manage to keep healthy, especially with all of the travel, days of driving and overseas flights?

DB: Part of it is I come from the old school rehab where they drummed into you the how to take care of myself. I manage to keep myself thin so I’m not stressing my shoulders. I also do a skin check with a mirror every day. So far, so good.

BV: What kind of cushion are you sitting on these days?

DB: I’m sitting on a ROHO® QUADTRO SELECT® LOW PROFILE®. I love these things, I’ve been sitting on a ROHO ever since I was hurt. I wouldn’t sit on anything else. I’m not sponsored by them. I don’t even get a free cushion. In fact, I paid cash for my last cushion because I was about to head out of the country and didn’t have time to mess with prescriptions and insurance.

And I always make sure my ROHO is under me — on my car seat, on the seat on the airplane, you name it.

BV: So even with all of your travel, no pressure sores?

DB: Nope, I’ve never had a pressure sore. But I’ve dodged a pressure sore bullet. Years ago I got careless and was sitting on a seat without a cushion for a while and got the start of a pressure sore. Fortunately, I caught it during my mirror check the same day. I was on a ROHO HIGH PROFILE® Single Valve at the time…Sure enough it worked, and the area got a little better every day. Within two weeks it was gone.

I learned my lesson and always keep a cushion underneath me. And like I said, I check my skin with a mirror because I can’t afford to miss a show and I don’t ever want to end up on my stomach for a couple months trying to heal a pressure sore.

BV: Thanks Dan! Safe travels!

Thinking back to when Dan first visited me in rehab I remember asking him if he thought there would be a cure for SCI — something I secretly hoped for. He replied. “I don’t think so. But here is the deal, let’s say there is a cure in say 25-years. Project yourself 25-years in the future and think back on what you would have wanted to do. Live an amazing life full of adventure, or mope about waiting for a cure?” I took those words to heart. Here I am 27-adventure-filled-years later. Grateful for good advice from a good friend!

References:

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Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

ADA Drive-By Lawsuits — Enforcement or Extortion?

Guest blog post by Bob Vogel

A handful of lawyers and people with disabilities are using well intentioned ADA (The Americans With Disabilities Act) accessibility laws in several states including California and Florida to rake in huge amounts of cash by filing hundreds, and in some cases thousands, of ADA-access lawsuits. In these states it is not uncommon to read about a single person filing more than two dozen ADA-access lawsuits a week, articles often refer to these lawyers as frequent filers.

Why are ADA-access lawsuits so common in California and Florida?

Federal ADA access law says places of public accommodation (businesses) must be accessible and can be sued for access violations (such as steps but no wheelchair ramp or lack of accessible parking spot). The person filing the lawsuit must have a disability that has been affected by the violation. Under federal ADA law the person suing is entitled to recover court costs and lawyer fees and that’s it. However, in an attempt to encourage better accessibility compliance, some states including California and Florida, allow for compensatory damages. For instance, in California a person can sue for at least $4,000 per violation, on top of court and lawyer fees.

The term “drive-by” lawsuits is often used to describe a person that files a great deal of ADA access lawsuits, the idea being that rather than sue a business when they run into an access problem, people filing these cases spend their time driving from town to town, business to business looking for any violation they can find to file a suit.

Armed with a list of businesses and violations from a new area, the lawyer cranks out lawsuits and sends notices to the businesses that they have been sued, usually offering to drop the lawsuit if the business settles by paying between $2,000 and $6,000, in some cases much more. Doing the math, if a lawyer files, say 12 lawsuits a week and settles on $4,000 per case, the money adds up quickly. Businesses claim this is extortion — plain and simple.

Lawyers that file these lawsuits claim they are crusaders for ADA access. The lawsuits may improve access, but at what cost to wheelchair users?

These type of drive-by lawsuits create animosity toward the ADA and leaves business owners with suspicion and mistrust of wheelchair users. I recently drove to a small industrial business park to get a car seat repaired. After I had transferred out of my car into my wheelchair my cell phone rang. As I was talking on the phone, people from surrounding businesses came out and were nervously staring at me. Weird. When I went into the seat-repair business, the owner also seemed nervous until I explained that I wanted a seat fixed— then he seemed relieved. After he fixed my seat, he apologized if he had seemed on edge when I first wheeled in and proceeded to explain that the business park owners had recently been sued because they didn’t have the proper striping and signage on their accessible parking. After consulting with an attorney, they found it was cheaper to pay a demand for something like $18,000 to drop the lawsuit than go to court. They said what really made them mad is nobody recalls the person that sued their businesses ever going to any of their businesses , in fact I was the first wheelchair user they recall seeing in the business park. They also thought it was odd that there was no follow-up to see if they had fixed the parking — which they had. To them, it felt like nothing more than extortion.

In a similar situation, I just heard from a friend that runs a spinal cord injury support group in Pollock Pines — a small, tight-knit community in the California foothills. She said a notorious ADA drive-by attorney had recently papered their town with ADA access lawsuits that ended up costing local businesses a huge sum of money to have dropped. It also forced three small businesses to close permanently. The lawsuits left an atmosphere of alienation toward wheelchair users. The support group has taken it upon themselves to organize a handcycle/bike ride for wheelchair users and non-disabled riders to create an opportunity for positive interaction to try and get back the community and understanding that was there before the lawsuits.

There are non-disabled lawyers that see the dollar signs in this area and recruit people with disabilities to file ADA lawsuits. A website for one such attorney reads “Confined to a wheelchair in California? You may be entitled to $4,000 each time you can’t use something at a business because of your disability.” One of the examples of access violation the site provides is,  a mirror in a restroom that is too high to use. If so, the site says, “You may be entitled to $4,0000!” The way the law is currently written, even if a business fixes the violation right away, the person filing the suit has already been harmed by the violation and can still sue and no warning is required.

Another area I find troubling is the way these lawsuits are worded for the court. The wording does as much perceptional damage to the image of wheelchair users as the worst telethon. Wheelchair users are described as “confined to a wheelchair,” and if you are suing because of an access violation — something like not being able to use a bathroom mirror, or lack of proper signage — the court documents describe things such as “Plaintiff [wheelchair user] suffers emotional and/or mental distress because of such discrimination…” Really? Lack of access sucks, but does somebody really suffer emotional and/or mental distress because they can’t use a mirror? While I understand legalese is a different language, but still, according, to these lawsuits, wheelchair users must be extremely emotionally fragile.

A good friend of mine argues that the ADA has been around since 1990 and businesses should know better, and should have changed by now.  She also argues that California and Florida have the highest level of accessibility, and perhaps this is because of the compensatory lawsuits, and I agree to a point. The problem with the argument is that when it comes to collecting money on ADA access grounds, everything is technically the same. If a business has stairs and refuses to put in a ramp or refuses to provide accessible parking, I’m all for a lawsuit if that is the only avenue. But let’s say a business has a van accessible parking spot out in front — well-marked crosshatch space for the lift, accessible levers on their doors, fully accessible bathroom, but they forget to put a sign on the bathroom that says it is accessible, or the access sign is the wrong color. The business is still liable for an ADA lawsuit and pursuant shakedown.

What do you think? Are these lawyers doing the dirty work for us? Is the access worth it? Or are these lawsuits doing more harm than good?

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Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at
online.relations@therohogroup.com.

“Paraplegic” feels trapped in a non-disabled body

Guest blog post by Bob Vogel

Chloe Jennings-White, a Ph.D., chemist living in Salt Lake City, Utah, lives her life as a paraplegic — and wheelchair users, she also wears long leg braces that lock at the knee to enable her to ambulate with crutches. She is comfortable and happy as a paraplegic. However, when she needs to use the flight of stairs in her house, she gets out of her chair and walks up and down the stairs, with the leg braces unlocked, enabling her legs to bend at the knee. She drives, but rather than the slow cumbersome task of taking her chair apart and transferring it into the car, she stands up and walks to the back of her car and puts the chair into the trunk. The car she drives doesn’t have hand controls.

Like many wheelchair users, Jennings-White enjoys outdoor activities. While most wheelchair users employ adaptive equipment and arm power to engage in these activities, Jennings-White simply removes her leg braces and goes on 12-hour hikes in the woods and climbs 11,000-foot mountain peaks.

When she wants to go snow skiing, Jennings-White stands up, clips into her ski bindings and spends the day on the slopes as non-disabled skier — at the top of a ski lift she will hike a considerable distance in order to get to the best snow on distant, very steep expert runs or chutes — runs with rocks or cliffs on each side.

If this sounds confusing — it is — because Chloe Jennings-White is only pretending to be a paraplegic. She chooses to live her life as a paraplegic because she has a rare condition known as Body Integrity Identity Disorder (BIID) — characterized by, in her case, by an overwhelming desire to become a paraplegic. For her, using a wheelchair and pretending to be a paraplegic helps ease this desire.

As of late, Jennings-White has been making rounds on the media circuit, first in January, appearing in Taboo on the National Geographic Channel in the episode titled “Secret Lives,” then as a guest on the February 27th episode of Anderson — the Anderson Cooper talk show. On the shows, Jennings-White explains that using a wheelchair helps her deal with her BIID.

Jennings-White says she appeared on these shows to bring attention to BIID and to help others with the condition to let them know that they are not alone. For that, I applaud her efforts. I can’t begin to imagine how difficult it must be to have BIID. According to an article in Newsweek, MRI studies of people with BIID suggest the disorder stems from a problem with the right sphere in the brain’s parietal lobe, the part of he brain that constructs body image.

The term that people with BIID often use to describe themselves is transabled. In the Newsweek article, Dr. Michael First, a professor of clinical psychiatry at Columbia University in New York, says there are parallels between BIID and gender identity disorder (GID) in which people feel that the gender they were physically born with is not their true gender.

As a side note, Jennings-White used to be a man — something she openly discusses in her blogs at transabled.org.

In Taboo “Secret Lives,” Jennings-White explains that she truly feels like she is a paraplegic and feels like she is faking it when she isn’t in her wheelchair. “It (using the wheelchair) is like a temporary stopgap,” she explains. She goes on to say, “in order to live a completely fulfilled self-actualized life is — for me — is to be paraplegic.” She explains she has a desire to have surgery to become a full-time paraplegic. “When I have an operation to become paraplegic I think the eventual outcome will be that I will feel like a complete authentic person and very happy.”

That’s a terrifying thought.

In a chilling clip on Anderson, Jennings-White explained that in a 2006 she inured her back and a doctor told her she needed to get rods to stabilize her spine. She refused to get the rods, and skis aggressively in hopes of having an accident and re-injuring her spine enough to become a complete paraplegic!

The TV audience’s reactions and the comments on the website toward Jennings-White are incredibly angry. Although I think of myself as open minded and empathetic, I felt angry, as well, and I couldn’t figure out why. She is a person with very real psychological and neurological disorder, and using a wheelchair makes her feel better. Why should this bother me? It’s not like she is using accessible parking spot or anything. There are others with the same disorder, and she is putting herself out there in the media to help them. This is a good thing. Yet, I couldn’t put my finger on why this upset me.

To try and find my answer, I carefully re-watched Taboo “Secret Lives,” pausing to take notes. Then I went on the web and spent some time reading Jenning’s-White’s blogs and her responses to comments. Upon re-watching the Taboo “Secret Lives” episode, the first thing that I noticed was Jennings-White IS parking in accessible parking spots, complete with a parking placard! WHAT?!? The segment says she has a slight limp, and shows clips of her walking up and down stairs, and shows her hiking in the woods with no leg braces. Jennings-White describes going on 12-hour hikes. From blog entries and the web it is clear that she scrambles over boulders, she hikes up mountain peaks, hikes to, and skis down very steep, expert only ski runs. Yet, she needs a parking placard?!

Jennings-White’s “portrayal” of a paraplegic also creates misconceptions and reinforces stereotypes of paralysis, including the idea that being paralyzed is all about the wheelchair and not being able to walk. Using a wheelchair and walking doesn’t even make the “top ten” list of difficulties that paralysis presents. A glaring example of this is her “paraplegic disguise” consisting of a wheelchair, leg braces and crutches, but NO CUSHION! Without a proper cushion, a real paraplegic would be hospitalized with a life threatening pressure ulcer within days!

Moreover, Jennings-White’s media portrayal of somebody that uses a wheelchair, but can walk when they “really need too” adds more confusion and misinformation about paralysis. The next time you or I need a wheelchair lift, or an aisle chair and we are asked “can’t you walk ‘just a little bit?,’” we can thank her.

I got further angered at Jennings-White because, for a person who insisting that she “feels like a fake” anytime she is out of her wheelchair, and feels like a paraplegic trapped in a non-disabled body, she sure manages to get over these “feelings” quickly when she wants to go hiking, skiing, go up and down the stairs or load her chair in the car. I believe her BIID is real — but using a wheelchair and leg braces only when it suits you isn’t “being a paraplegic,” it’s just playing dress up.

In terms of being paralyzed, using a wheelchair and not being able to walk is just the tip of the iceberg. I suggest Jennings-White try experiencing the full paraplegic experience. If she wants to go up and down stairs, she should drag herself up and down with her hands. No walking her chair to the trunk to load it into the car. No walking, hiking, mountain climbing, skiing, “when she feels like it.” Get a professionally fit wheelchair cushion, do mirror-skin checks twice a day to avoid pressure ulcers. It is good practice—she will need it. She should manage bladder with intermittent cathing, or use an indwelling Foley. She should have a bowel accident or two — preferably at work — and see how “self actualized” she feels.

But the most egregious part of the National Geographic Taboo segment — the one that got me furious — is the suggestion that letting children see a person in a wheelchair may cause BIID! In the segment — at around 20:20 — the narrator says, “At Cambridge University Chloe has a successful career developing antipsychotic drugs. She has over two dozen patents to her name. So how does such an intelligent and successful women end up leading such an extreme double life?” Then we hear Dr. Michael First say, “The most common experiences — and this applies to Chloe — is early childhood exposure to someone with that disability. It’s very common for children to identify with roll models of a family member or a relative.” While this is being said, viewers see a close-up of Jennings-White’s face on the left side of the screen and a close-up of Dr. First speaking right side of the screen. Next Jennings-White says, “My aunt was paraplegic and, um, I would always be fascinated by her leg braces. She would come in to me and say these are silly things aren’t they? And I, what I wanted to say is, ‘No, I think they are lovely. I want them, too.”

WHAT?! If kids see us in our wheelchairs it might cause BIID?! Does that also mean that if a little boy sees a woman, he will want a sex change?

I hold a bachelor’s degree in communications, so I understand that there is no way of knowing what Dr. First or Jennings-White meant, but the way the show is edited sends a clear message, “Keep your kids away from people in wheelchairs, especially friends and relatives. If a child sees a wheelchair, it might cause BIID!” This is a horrible and damaging message. Imagine being a wheelchair user trying to adopt a child and the adoption agency or mother of the child up for adoption sees this!

Speaking as a wheelchair user that became a T10 paraplegic at age 25, I think about all of hard work and time it took to learn to live and thrive with paralysis. — even more importantly, the time and work it took to accept it, and move beyond it. It is unfortunate that Jennings-White’s condition appears to make her to constantly focus on the wheelchair and on paralysis because she feels fake when she is out of her wheelchair.

 

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Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at
online.relations@therohogroup.com.

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