I am in the early stages of designing the landscape for my new home, the Universal Design Living Laboratory. This home and garden will be open for tours to the public when it is completed, estimated to be spring 2009. My husband and I purchased a 1.5-acre treeless lot and will be building a 3,500 sq. ft. national demonstration home on it soon. The rest of the property will be designed for outdoor living and scenic views from inside the home, as well as from the patio area. Read the rest of this entry »
It’s been a rough month. After more than two decades of working as an art director for a major daily newspaper, my husband Jack was nudged into early retirement some four years ahead of plans in keeping with changing times. People are not reading newspapers any more, or at least there are no new readers. The Internet has taken over, and so the news business must go where the readers are. Newspapers across the country are shrinking, and efforts are being shifted into dressing up Web sites rather than newspaper pages.
Jack’s initial reaction at being told that the art department was going to be eliminated was shock. Then, hearing that a couple of positions might be salvaged and the workers taught new skills, he moved into the denial stage, following Dr. Elizabeth Kübler-Ross’s grief cycle, as described in her classic 1969 book On Death and Dying. Although he does not have a disability, the progression of emotions Jack faced is something with which we can all identify. Read the rest of this entry »
This month I write to you with a very heavy heart. Over the years I have met with dozens of families who have had loved ones take their lives after both short, and long-term battles with paralysis, but for whatever reason a recent suicide from a friend of mine’s cousin who was paralyzed in a motorcycle accident, just last year, is lingering in my mind. How is this situation any different from any other time that I have been informed of a suicide? This young man left a note, almost in the form of a book that he wrote as he was taking his life.
Before I go any further, please know that I am not a mental health professional or an expert on this subject, so if you or anyone that you know is showing any signs of depression or suicidal tendencies, please contact a mental health professional immediately. I am merely sharing with you my insights gained not only from connecting with people who have been clinically depressed or even suicidal, but from my own contemplation of ending my life in the past.
This is a very serious issue and shouldn’t be waved away or swept under the rug because it is too uncomfortable or too much of a downer. Probably the majority of people with spinal cord injury or who have experienced traumatic adversity in their lives have thought about suicide. I feel compelled to devote at least one column to this subject. Read the rest of this entry »
When I was in junior high and high school, not quite as far back as the Dark Ages, my schoolmates were divided into two groups—cool and uncool. I don’t know when this division started or who started it, but I know from my teaching experience that students today still fall into one of these two groups. They might have different names—maybe the cool kids are “popular,” “in,” or “hot,” while the un-cool are “dorks,” “nerds,” “dweebs,” or worse. But no matter what each group is called, all students fall into one or the other; no one is neutral.
There were fewer cool kids than uncool kids. Cool kids wore the latest designer fashions, were smart or at least acted smart, and seemed to be liked even by the teachers. They hung out, went to parties, hosted parties, joined a gazillion clubs, attended every school athletic event and function, and, well, they just looked cool. The guys often were major athletes and the girls usually were cheerleaders.
Uncool kids wore regular, nondesigner clothes, might be smart or brainiacs, but most were average, played in the school orchestra or marched in the band, joined the chess club, wrote for the school newspaper, blended into the masses, and generally hung out with other uncool kids.
As you might have guessed, I was an uncool kid. If you had a picture dictionary back then, you’d probably have found my picture next to the word “Average.” I didn’t even try out for cheerleading because I knew it was a hopeless cause. In fact, I didn’t like cheerleaders—not because I wasn’t one but because it seemed like they thought they were “all that” and that the rest of us were beneath them. But for the most part I was happy in my “uncoolness,” happy with my uncool friends and my average, uncool life. Read the rest of this entry »
The United Spinal New York Jets quad rugby team is a force to be reckoned with. “We’re back on the map,” says Damon Rozier, Jets co-captain, who along with Len Lacina, has been the driving force behind the team’s success.
The 2007–2008 Season has been good to the Jets, who have practiced hard all year and earned a pile of respect from their opponents for their grit and determination on the court and impressive tournament play.
The team played tremendously at the United States Quad Rugby Association (USQRA) Atlantic North Regionals in Philadelphia, Pennsylvania, ramming their way to 2nd place and claiming a ticket to Atlantic Sectional Playoffs in Raleigh, North Carolina on March 14–16. Last time the team was invited to the Sectionals was in 2003 where they finished in last place. But the trip back was reason to celebrate and proof that the team was once again a viable contender in the sport of quad rugby. The sectionals presented the tightly knit Jets unit a hefty challenge early on, as they mixed it up with their rivals, the Magee Eagles, who had outplayed them in Philly to take the Regional crown. But payback wouldn’t come that easy. The Eagles proved to be too much for the Jets, as they lost their opener 47-21. The Jets tried to shake off the jitters during their second game, but lost to the Tampa Generals, 55-35.
But like any great heavyweight, the Jets fought back. The team won their final three games against the Carolinas Crash, Raleigh Sidewinders, and Capitol Punishers––finishing in a respectful 5th place and gaining a wealth of experience and confidence.
“We have a lot of talented players and we all play really well together,” Rozier says, adding that the Jets have focused a lot of their energy on practicing for opponents and being mentally prepared for their games––one reason for their newfound success. He also mentioned that the sport has taken off in popularity since the movie Murderball was released––which stars Keith Cavill of the Jets–– along with a host of other wheelchair rugby athletes. “The movie really inspired a lot of younger guys to get out and try the sport,” Rozier says. Read the rest of this entry »
When Congress passed the Medicare Modernization Act of 2003, one of the ways it paid for the new prescription drug program was to require a competitive bidding program for wheelchairs and other durable medical equipment (DME) that Medicare pays for. United Spinal Association, along with other disability groups, has voiced concerns to Congress that the looming competitive bidding program is likely to harm Medicare recipients. Read the rest of this entry »
On Wednesday April 23 the United States House voted 349 to 62 to put a moratorium on seven harmful Medicaid regulations that would have had severe impacts for people with disabilities. The harmful rules cannot go into effect until April 2009 – which gives time for a new Congress and a new President to fix the rules permanently. Read the rest of this entry »
Simple tools strategically placed can help you conserve energy and make your home work for you.
By John Canning
The author, who has a progressive form of multiple sclerosis, lives by himself in a three-story home.
You know what an “accessible home” is; you may already have one. Things like ramps, wide doorways, elevators, and stair lifts make a house accessible—easy for a person in a wheelchair to get around in. But is your home “assistive?” There is a difference, albeit a fine one. An assistive home is filled with devices that help you get through the day with as little struggle as possible, devices that can be found on the Internet from as little as a few dollars.
Any person with a physical disability is stuck in a “Catch 22”: Simple everyday tasks are a struggle; the more you struggle, the more energy you expend and the more tired you become; the more tired you are, the more you struggle; and so on. Assistive equipment can help you break out of this vicious circle.
Assistive devices are, quite simply, things that can help you complete your daily tasks. Grab bars, canes, and transfer devices are all assistive devices. But there’s so much more out there. Read the rest of this entry »
Do you ever wonder how your federal tax dollars are spent? The Center on Budget and Public Policy Priorities has put out a new paper explaining how federal taxes are spent. The paper outlines how the government spent $2.7 trillion dollars in 2007. To read the paper click here.
There is hope that Congress will soon take action to block Medicaid rules that are likely to harm people with disabilities. A bill called Protecting the Medicaid Safety Net Act of 2008 (HR 5613) is moving in the House, led by John Dingell, the Chairman of the House Energy & Commerce Committee. We hope for a full House vote in the next few weeks. The Senate Finance Committee is ready and waiting for the bill after it passes the House Floor. Read the rest of this entry »
United Spinal’s Accessibility Services team is fielding access questions for New York’s new state-of-the-art major league ballparks.
By Rob Ingraham
“Our challenge is doing the right thing by the disabled community and our clients. Other consultants don’t have that dual obligation. That’s the tightrope we walk.” Tightropes notwithstanding, Dominic Marinelli, director of United Spinal Association’s fast- growing Accessibility Services department, is inspired by his team’s accomplishments and excited about its prospects for the future.
Accessibility Services is currently juggling “between 15 and 20” major accessibility consulting projects while also coordinating professional accessibility training seminars across the country and serving on a number of important advisory committees developing barrier- free design requirements used by federal, state, and local officials.
“Our whole game is that we also work on developing accessibility standards and that gives us a perspective that I don’t think anybody else has,” Marinelli continues. “There are a couple of consultants that also work on this sort of co-development, but none that also represent disability organizations. Our combination is unique.” Read the rest of this entry »
The American National Standards Institute includes criteria to make new homes visitable by people with disabilities.
By Jennifer Perry
“Visitability,” a growing movement focusing on making individual homes accessible by targeting the most fundamental, inexpensive features––getting in and out of the house and being able to use a bathroom––has gained important support from the American National Standards Institute (ANSI). The Institute’s accessibility standards, known as ANSI A117.1, will include design criteria for visitability features that could be adopted by municipalities or implemented by state or local ordinances across the country. ANSI A117.1 serves as the accessibility standard adopted by many jurisdictions nationwide since 1961 (see sidebar).
According to Concrete Change, a Decatur, Georgia, advocacy group (www.concretechange.org), “‘Visitability’ is a movement to change home construction practices so that virtually all new homes––not merely those custom-built for occupants who currently have disabilities––offer a few specific features that make the home easier for people who develop mobility impairments to live in and visit…The spirit of visitability is as important as the list of features. That spirit says, it’s not just unwise, but unacceptable, that new homes continue to be built with gross barriers––unacceptable, given how easy it is to build basic access in the great majority of new homes and given the harsh effects major barriers have on so many people’s lives. These easily-avoided barriers cause daily drudgery; unsafe living conditions; social isolation, and forced institutionalization.” Concrete Change maintains that, “No arguments are accepted that ‘We’ll build the house so a ramp could be added later.’” Read the rest of this entry »
When visiting a friend resembles an episode of Man vs. Wild.
By Beth Livingston
Last summer I made plans to visit my friends Lisa and Mike in Salt Lake City. I was going to be in town on business and delighted in the thought that I would get to see them, too, as a side benefit. We spoke on the phone about dates and directions, and where to stay.
Lisa and Mike work in two different towns, Orem and Salt Lake. To save time and hassle, they bought a modest apartment in “the Avenues” of Salt Lake City where they stay when working in the city. Lisa warned me that the apartment was small, up a flight of stairs and the bathroom was certainly not ADA-compliant. I responded that most of my life is not ADA- compliant and that I would be fine.
I love and trust Lisa and Mike implicitly. They both work in the medical field, and they are the kindest, most caring friends you could wish for. I never have that awkward feeling that I am somehow disrupting the normal pattern of their life when I show up and need to be piggybacked 75 yards down a narrow pathway flanked by waist high snow to their door, Lisa in tow with my wheelchair thrust over her shoulders. No, I’m sure they carry all their house guests around. I never feel like a burden around them. That makes for a great relationship. Read the rest of this entry »
United Spinal collaborates with hospitals, rehabilitation facilities, and selected community–based organizations (“Host Agency”) that agree to provide the United Spinal Peer Mentor Program at their facilities. Each Host Agency designates a licensed health care professional—the “Mentor Coordinator”— who will be responsible for implementing the general operations of the Peer Mentor Program.
What is Peer-Mentoring?
Peer-Mentoring is an effective way for people to learn a variety of personal skills, including problem solving, assertiveness, and “SMART” goal setting. Trained Mentors can assist with the challenges of adjusting to new situations. Within the context of spinal cord injury (SCI), a Mentor is someone with SCI who has learned from his or her own experience and is successfully living with SCI. Mentors are knowledgeable about coping strategies, daily living skills, and SCI resources. Mentors have completed the United Spinal Peer Mentor Training Program, and are committed to sharing their knowledge and experience with other people with SCI. Read the rest of this entry »
An exciting new networking program from United Spinal debuted to rave reviews in Salt Lake City.
By Lynette Ballard, LCSW
The University of Utah Hospital and Clinics Rehabilitation Center in Salt Lake City had the honor of launching one of United Spinal Association’s most exciting new programs as 15 men and women with spinal cord injuries (SCI) took part in two, one- day trainings last fall designed to develop peer mentoring skills.
Not Alone
United Spinal’s Peer Mentoring Program is an innovative addition to traditional rehabilitation strategies for individuals trying to cope with the overwhelming physical and psychological trauma of SCI. The program connects newly injured people with former rehabilitation patients who have successfully adapted to living with SCI. Mentoring helps newly injured people realize that they are not alone and that a meaningful, productive life still awaits them.
I took on the role of Peer Mentor Coordinator and in partnership with United Spinal staffers, introduced the program to potential mentors in the Salt Lake City community.
The literature shows that, whatever the diagnosis, people have better physical, mental, social, and emotional outcomes when they are able to meet with, and feel supported by, people with a similar diagnosis. Our experience with informal mentoring confi rmed the importance of newly injured patients having the opportunity to connect with someone experienced in living successfully with their SCI.
The spinal cord’s ability to process sensory information after a complete injury could play a key role in the development of new robotic rehabilitative devices.
By Tom Scott
The human body can function under extremely adverse conditions. This is becoming more evident in the field of spinal cord injuries (SCI), where researchers are uncovering the spinal cord’s ability to adapt to injury and the need for advanced robotic-assisted locomotor training devices to aid in recovery.
The Brain-Spinal Cord Connection
During a symposium at the New York Academy of Sciences, Reggie Edgerton, professor of Physiological Sciences at UCLA, presented his team’s research findings, as well as other findings within the field, regarding locomotor training in both human and animal models that demonstrate the spinal cord can not only interpret sensory information after a complete SCI, but also use this information on its own to coordinate physical tasks such as stepping or walking.
“The spinal cord functions as part of the brain; it’s not its servant,” says Edgerton, who is focusing much of his efforts on learning how neural networks in the lumbar spinal cord of mammals, including humans, control stepping and how this stepping pattern becomes modified by chronically imposing specific motor tasks on the limbs after a complete injury. “Plasticity in the spinal cord is pretty remarkable.” Read the rest of this entry »
“Do you want to fly?” asked the voice on the other line.
“Do I wanna what?” I asked, perplexed.
“Fly,” stated the voice.
“Ya mean like an airplane?” Suddenly I remembered that I had e-mailed a company I found on the Internet about flying for people with disabilities.
“Yes.” I didn’t hesitate, especially since my significant other had been touting his prowess on Real Flight Simulator for months and my attempts at the game landed my 747 in Jamaica Bay off Long Island, New York, at every take-off.
I was going to do the real thing!
My SCI/D philosophy is one must try something new every year. Flying fit the bill. Hell, flying was beyond anything I even imagined! Read the rest of this entry »
Probably the most important reason for people with multiple sclerosis (MS) to be exercising is that exercise tends to put the various body systems back into balance. And since MS seems to be a disease of an immune system out of balance, it seems that exercise should be of paramount importance. Not only that, but one doctor said that stress is what puts the immune system out of balance in the first place, and exercise is believed by many experts to be the best stress management technique.
If you are not already exercising, it may be wise to consult your physician or physical therapist who can write an exercise prescription. Because MS can affect people so differently, an exercise that works wonderfully for one person may not work at all for another. Also, the right exercise program will vary depending on the degree of a person’s disability. Another advantage to seeing a physical therapist is that helping people to become more mobile is exactly what they do. Read the rest of this entry »
The Centers for Disease Control has reported that 92% percent of US toddlers are vaccinated against polio. Ninety-two percent sounds good, until you realize that leaves more than one million US children unvaccinated. Between 2005 and 2006, polio vaccination dropped in 20 states and in 10 large cities. While any reductions in polio vaccination are troubling, the location of the cities and states where vaccination dropped is frightening. The cities are major points of entry into the US—New York, Philadelphia, Houston, and Seattle—where a nearly 4% drop was reported. It’s no surprise that toddlers living in poverty have the lowest polio vaccination rates—below 87% in Boston, Indianapolis, Memphis, Phoenix, Detroit, Houston, and Seattle—rates lower than in Vietnam.
Equally frightening, the states with drops in vaccination are on our borders with Mexico and Canada. Arizona, Texas, and New Mexico reported polio vaccination reductions as did 70% of the states that border Canada. Even Minnesota had a decrease, which is both frightening and incomprehensible, since five Minnesota children caught polio in 2005 after coming in contact with someone who imported the poliovirus across the US border.
Polio’s recent importation into America and the drops in vaccination have prompted the IPTF to create 2008 “The National Immunization for Polio Prevention in Infants and Toddlers”—or “NIPP IT”—Campaign. Read the rest of this entry »
Last month, I noted that container gardening is ideal for people who use wheelchairs. Shop for containers large enough to hold their roots; containers with 10-inch or larger diameters can hold more massive displays of color. This also helps to ensure that water is available to the plants and enhances survival.
For best accessibility, select containers that are 24 inches tall. Containers can be made of clay, concrete, plastic or wood. Realize that clay pots are not frost proof and must be moved to a protected area, like a garage, if your winter temperatures dip below freezing. Plastic pots will last longer if made with ultraviolet inhibitors. Chimney flue tiles and drainage pipes made of fired clay and whiskey barrels also make great containers for the accessible garden. Make sure your containers have holes in the bottom to allow water to drain out. Read the rest of this entry »
