Josh Dueck was an accomplished freestyle competitive skier and ski instructor when he suffered a serious accident that left him with a T11 spinal cord injury that left him in a wheelchair, paralyzed him from the abdomen down in 2004. Recently, Dueck won the bronze medal in the Mono Skier X during the Winter X Games, but he’s not stopping there. With a lot of hard work and determination, Dueck became the first paraplegic skier to accomplish a sit-ski backflip.
The star of the Switchback Entertainment film Freedom Chair, which won Best Documentary at Powder Magazine‘s 2012 Powder Awards, dreamed of doing another back flip while still in the hospital bed following his injury. With the help of the sit-ski, a chair that allows for skiing via a monoski, Dueck set out to overcome the obstacles and accomplish his dream.
He began practicing at the Barn at Woodward A. Copper, an indoor training facility on Copper Mountain in Colorado that offers a foam pit for skiers to practice new moves safely. Once he had the mechanics of the back flip down, he returned to his home in British Columbia, where he practiced with an airbag at the Powder Mountain Snowcat operation in Whistler. Then on February 3rd, he took to the snow and completed the first ever sit-ski backflip, as seen below.
Right on the heels of National Cerebral Palsy Awareness Day, which was March 25th, comes this story from YouTube. Texas mom Kristi Roberts has posted a public video in response to her school, Kings Manor Elementary School of Kingwood, TX, after the school attempted to keep her daughter LaKay, who has cerebral palsy, from using the walker on which she has relied for the past two years. The video, which also shows LaKay’s first steps using her walker, has a taped conversation with a school official about the dispute. It has gone viral on the internet, with over 35,000 views at the time of this post.
Most viewers are supportive of mom Kristi Roberts’ arguments. Kelly Klein, development director for Easter Seals of Greater Houston, says, “The parents I’ve seen who’ve gotten the farthest with their kids are the parents whose voices are the absolute loudest. They have to fight back.”
LaKay uses a Kaye Posterior Walker to get around school. She also has a wheelchair, but her mother maintains that the walker is the preferred transportation, and LaKay’s doctors have approved its use. According to Roberts, school officials have been badgering the family for a couple years to have LaKay use a wheelchair, although they do not appear to have any compelling reason why she should use one instead.
After LaKay fell in the parking lot recently, the school stepped up the pressure, which resulted in this conversation between Roberts and Special Education Director Gary Lemley:
KR: “Why can’t she use a walker?”
GL: “I just told you, we don’t feel like it’s safe any longer.”
KR: “Why can’t she use the walker?”
GL: “Basically, she can’t use the walker because we don’t think it’s safe.”
KR: “Why isn’t it safe?”
GL: “I just told you, we don’t feel like it’s safe any longer.”
KR: “Why? Why isn’t it safe after two years of using it? How many kids fall down at recess? Do you make them take their shoes off and buy new ones?”
GL: “No, ma’am.”
GL: “They’re not using walkers.”
KR: “Are you being discriminatory?”
GL: “No m’am. I’m not being discriminatory.”
KR: “Yeah, you are. Taking a walker away from her after two years of using it because you want to strap her in a wheelchair because it’s easier.”
GL: “We’re going to not do what the mother wants us to do. Be sure and get this on tape. You’re not concerned about LaKay.”
KR: “You’re not to be rude to me, period. I am a parent, and you are an employee that’s supposed to be an advocate for this child. From day one, you have not.”
GL: “It’s up for a court to decide then.”
It may indeed be up to the court as Kristi Roberts intends to sue the school district to ensure that her daughter is allowed to use the walker for as long as she is able to walk.
The New Caney Independent School District declined to comment on the dispute, except to release this statement:
New Caney ISD’s focus is and always will be to meet the needs of our students and to protect them. However, we cannot comment on any case involving confidential student information. There are strict laws protecting student privacy, beginning at the federal level with FERPA (Family Educational Rights and Privacy Act) and reinforced by Texas law and NCISD policy. We believe these laws are in place for a reason — to protect children from a public discussion regarding their confidential records. While a parent may choose to share information about his or her child, we cannot. We remain committed to respecting the ethical and legal guidelines and laws that protect our students’ right to privacy. To that end, it is important to know that the video and audio recording at issue was not sanctioned or authorized by the District to be released for public dissemination. Furthermore, the District does not agree that the recording at issue here is a complete recounting of the entire underlying confidential discussion and is therefore neither representative nor accurate towards explaining the District’s ongoing efforts to serve its students.:
During his 30th birthday celebrations, John Hastie decided to do something to raise awareness of the successful, talented, and creative individuals around the UK and the Netherlands, who–like himself–have Duchenne Muscular Dystrophy (DMD). The journey to make the documentary, A Life Worth Living, was not an easy one, but as the film nears its April debut, things seem to be falling in place for Hastie.
What motivates a man who needs near round the clock care to set off on a journey across Europe to meet other Duchenners? According to Hastie:
My deteriorating health makes me realize that there are more years behind me than ahead. But I’m not dead yet, and I am determined to document just what can be achieved by people living with Duchenne Muscular Dystrophy. There are so many remarkable, spirited Duchenners out there who have so much to offer and can inspire a younger generation… it’s time that story was told.
The Cast of a Life Worth Living
Hastie set out to find the best and brightest Duchenners, and he truly found some inspirational men to feature:
Stuart is a writer from Solihull, who has completed a World War II thriller novel and is already deep into writing his second book at 28 years of age.
Carl is a highly active 23-year-old supporter of Action Duchenne in Manchester, England, where he campaigns and raises funds for DMD awareness. For his tireless work, he was awarded Mancunian of the Year in 2010.
Ian is a 26-year-old artist from Wales. His recent autobiography, DMD: Life, Art and Me gives a look into Ian’s life as well as raises awareness for neuromuscular disease.
Mark is a 40-year-old graphic designer and photographer from Edinburg, who lives independently with his cat, Winston.
Mashesh resides in London, where the 28-year-old campaigns and raises funds for DMD alongside his three sisters.
John is a 42-year-old from Holland who works in the music industry, where he organizes pop concerts.
Ginger Rodriguez is an interior designer from Alexandria, Virginia who found a new mission in life after fostering an infant living with disabling medical conditions. Four years later, Sean is now her adopted son, and Ginger has a new focus to her design business: helping other parents create rooms that are both attractive and functional for kids with special needs.
According to Ginger, the aim of this type of redecorating is to make the child’s room look like a bedroom, not a hospital room. The advice she provides includes some simple ideas that can go a long way in making caring easier, and they may make a big difference for a child who is often confined to a bedroom due to health issues.
Remove carpet from the bedroom and other areas of the home to which the child has access. This allows wheelchairs and IV poles to be moved around more freely. If the child utilizes a wheelchair, keep in mind the average wheelchair requires five feet of space to turn, and accommodate this space in your design planning.
Think about height. Move light switches, bookshelves, door handles, closet shelves, and access to music or other entertainment within reach of the child by lowering their position on the wall.
Keeping a child’s mind occupied during treatments or periods they will spend in bed goes a long way towards having a happy child. Make sure the TV, radio, books and other activities are within reach of the bed. Ginger suggests using Velcro to attach the television’s remote control to the headboard so that it doesn’t get lost or fall out of reach.
Find dual purpose ways to use furniture. Try using bedside tables that include a mini-fridge for medicine and juice, or that can be locked to house medical supplies.
Consider switching the bedroom door for a pocket door, as this frees up much of the room’s floor space normally taken up by a traditional door.
Let your child help pick out paint colors. Especially for a child with health issues, it can be confidence-boosting to have some control over their surroundings. Consider swapping traditional art and decor for murals which help avoid the safety risks that framed or 3-D art may pose if it is knocked off a wall.
Battery-operated door alarms can be a huge asset, and allow you to get more rest as they will sound if the child opens the bedroom or front door.
And don’t forget these other possibilities:
A desktop sized water fountain or trickling water sound effect may help with pain management.
If smells do not bother your child, a vanilla or lavender scent can be calming.
Focus on pleasant tactile elements like squishy toys or silky fabrics.
Planning a wedding can be a whole lot of fun, or it can be incredibly stressful. For those planning a wedding that utilizes a wheelchair, the task may seem downright impossible. Finding an accessible venue, choosing a dress that works while sitting down, handling the first dance–it can all be challenging. Before you cue the Mission Impossible theme song, give these thoughts some consideration when planning your big day.
Choosing a Venue
Just because a venue’s website states that it is wheelchair accessible, don’t count on the accessibility fitting your wedding plans. For example, some venues that are indeed accessible expect the bride to use a wheelchair ramp that leads to a side door, spoiling the grand entrance through the front door that other brides use. While there are many fabulous venues that are wheelchair accessible, be sure to visit them in person to make sure the facility fits your idea of the perfect day before booking or sending a deposit. If the venue will be providing lifts or ramps, see if you can customize them with decor or runners that fit between your chair’s wheels.
Many couples find that finding an all inclusive venue is the easiest option. With these types of venues, the guests simply move to a second room for the reception, or the venue changes the setup to tables and chairs while everyone is on the dance floor. Some venues even include honeymoon suites, which can take the stress out of planning a honeymoon away as well.
Choosing a Dress
Let’s face it, most wedding dresses are designed with the back of the dress as a focal point. Don’t let the fact that you will be sitting during your ceremony sway you from trying on the perfect dress. A good tailor can do wonders with a dress, and you might be surprised to find that a little creativity can make most dresses work well for sitting. If the idea of trying on various dresses in a bridal shop doesn’t sound enjoyable, call around and ask if you might be able to bring dresses home to try on. Many locally owned bridal shops will permit this with a deposit. If you find a tailor you prefer, see if he or she could be present to help you decide which dress will work best for your needs.
The First Dance
Some couples opt not to have a first slow dance, while others choose to not skip this part of the traditional wedding. It comes down to personal choice. If you feel comfortable with it, go for it! Otherwise, some options include inviting all of the couples to dance the first dance or having an upbeat song for the first dance that encourages everyone to get on the dance floor. The best part of having a wedding is it’s your day, so you make all the rules!
Video taken by a father during a 2010 trip to Disney World has gone viral on the web because of the way the Transportation Security Administration handled a three-year-old wheelchair user. Prior to flight, a boy was patted down by TSA agents and his body swabbed for explosives.
The video shows the boy clearly confused by the entire procedure. Although the event happened before newer airport security guidelines, the video seems to encapsulate public frustration with the TSA, including their handling of unique situations like those posed by wheelchair users.
In the spring of 2010, Matt Dubiel and his family were in Midway Airport in Chicago en route to Disney World. Because his son’s wheelchair could set off metal detectors, Dubiel was forced to watch the toddler–who was in a wheelchair with a body cast–be patted down by a TSA agent. He was not allowed to stand near the boy during the process. Dubiel said he did not object at the time because he was afraid that to do so would put the family trip at risk of delay, but he had the prescience to videotape it.
“I tape-recorded it because I wanted to let the gentleman know that was examining my son that there was a camera on him, and anything that he was going to do, that he needed to be comfortable doing on camera,” explained Dubiel. “And if he wasn’t, he needed to stay away from it.”
The family forgot the incident and it only resurfaced when Dubiel happened upon the video a few days ago. “As we watched it, I felt like I was in the moment again,” he said. “I was overcome with the same emotion I felt–anger and sadness and frustration.
“The more I thought about it, the more I thought, ‘I’m going to share this. I wanted to share with other parents and let them see firsthand what happened.”
Within a few days, the video had gone viral. As of now it has been viewed over a million times. Most comments on YouTube are critical of the TSA and the video comes on the heels of other negative publicity for the agency, including rumors that agents are targeting breastfeeding women and a blogger’s claim that he was able to bypass full body scanners. These stories depict an agency with plenty of paranoia but little respect for the citizens it is intended to protect. Even worse, videos like this seem to confirm that the agency lacks a rational system for detecting terrorism.
As Matt Dubiel put it: “There hasn’t been one instance in the United States of a 3-year-old carrying explosives onto an airplane or doing ill will to anyone.”
The agency recently created a toll-free number called TSA Cares, which provides information for passengers with medical needs or disabilities that might require special screening procedures. The hotline is available Monday through Friday from 9 a.m. to 9 p.m. EST (excluding holidays) at 1-855-787-2227.
And if you are flying anywhere soon, don’t forget to bring along a video camera!
The upcoming 2012 Paralympics have renewed the controversy regarding technology that some athletes will use in competition. The controversy over high-end prosthetics began during the 2008 Beijing Olympics largely due to the so-called “Blade Runner”–South African athlete Oscar Pistorius. He uses two carbon fiber prosthetics, which some experts believe have more spring than that provided by the legs of able-bodied athletes.
Pistorius was nearly denied the opportunity to race against able-bodied athletes due to disagreements between officials about the unfair advantage prosthetic technology offered over the competition. Ultimately he was allowed to compete, but the question of unfair advantage is far from over.
In a recent interview, sports psychologist Jason Mazanov of the University of Southwest Wales questioned the use of these prosthetics. “One of the core ethical questions that Oscar Pistorius raises is what we call ‘authenticity’. So that is, is what Oscar Pistorius does a result of him the athlete or him the technology, the person interacting with the technology?”
Many countries cannot afford to invest the amount of money required for carbon fiber feet, leaving poorer countries around the world facing an uneven playing field during the Paralympics. The technology gap between developed and underdeveloped countries seems likely to widen further, but supporters and athletes in affluent countries think that it isn’t simply the prosthesis that makes the athlete.
When Kelly Cartwright, who competes both in running and long jump, was questioned about the advantage the artificial limb she uses, she responded, “I do think about that a lot. I think as well it comes into […] money and also knowledge as well. But they are expensive, obviously, running legs and prosthetic legs. It may not necessarily mean just because they get a leg they can run as well.”
Time will soon tell, as Kelly Cartwright will be competing in the long jump against an athlete with two carbon feet at the Paralympics in August.
Cora Beth Taylor has traveled a journey that many children never travel. By the tender age of 9, Cora has had more than her share of heartbreak, obstacles and triumph. A triplet, she and her two brothers were born premature. Unlike her brothers, however, Cora’s muscular development started declining when she was a year old. She was diagnosed with cerebral palsy at 18 months old. Her parents, Kevin and Beth, exhausted every resource to try to help their daughter. In 2011, they traveled from Piedmont, Oklahoma to China so that Cora could receive a cutting-edge stem cell treatment that promised her a new lease on life–a treatment not yet available in the U.S.
City schools raised nearly $50,000 to help the Taylor’s pay for the trip. “That was a difficult decision to make to take your child to a foreign country for medical treatments,” said Beth. “Living in the U.S., you feel like this is the best there is.”
Unfortunately for Cora and others like her, stem cell research in the U.S. is progressing much too slowly. Scientists believe stem cells treatments may cure several debilitating injuries and diseases. Critics, however, remain unconvinced. It will be years before stem cell treatments receive FDA approval. Duke University is currently studying stem cell treatment for children with cerebral palsy, but the FDA has not granted it clearance to use donor stem cells. Medical experts believe it will be years before the stem cell treatment Cora received is available in the U.S.
Research hospitals in China are already using stem cells from donor umbilical cord blood to treat children with cerebral palsy. Cora and her family stayed in China for 37 days, during which Cora received eight stem-cell transfusions. Doctors placed cells into her spinal column through a spinal tap.
“Within the first couple of weeks we could see changes,” said Beth. “We could see definite improvements in strength and balance.”
Cora did her first-ever sit-up in China. “The thing that I was most happy about accomplishing was a sit up. Because I’d tried to do a sit up before going to China, but I just couldn’t do it.”
Today she can do 20 situps! More significantly, Cora no longer needs a walker. Before the treatments, she couldn’t walk without her walker. It’s now been months since she used it, and she didn’t need it when she recently competed in beauty pageant in Piedmont. Doctors are optistic and expect Cora’s stem cells to continue maturing over the next few years.
Cora is even more optimistic, adding, “So, I’m really excited. I don’t think there’s anything that I couldn’t accomplish.”