Here are four sites where dreams of romance for people with disabilities have come true.
By Linda A. Cronin
More people are turning to the Web to find someone to share their life with than ever before. In response, online dating sites are flourishing. When I began my research on disability related dating sites, I was amazed to find over 15 different websites.
There are two basic types of sites: matchmakers where someone reviews your profile and matches you with others depending on your parameters, or sites where you review the profiles and photos yourself and send a message to someone and post a profile of your own.
What follows is a small sampling of what’s out there on the internet for people looking to connect with others—potentially significant others—with disabilities. Read the rest of this entry »
Functional Electrical Stimulation (FES) offers numerous benefi ts to individuals living with disabilities. But education is paramount to ensure the safety and efficacy of this experimental treatment strategy.
By Tom Scott
The application of electrical stimulation in a rehabilitative setting was initiated nearly half a century ago. In 1960, W.T. Liberson, a physical rehab specialist and medical researcher, began developing a heel switch-triggered personal electronic stimulator device to correct foot drop (weakness or paralysis of the muscles involved in lifting the front part of the foot). Liberson provided the basic groundwork for future rehabilitative techniques involving functional electrical stimulation (FES). His work has led to the present explosion of FES-related research engaging countless scientists, propelling it to a legitimate and viable treatment option for many patients with spinal cord injuries and disorders (SCI/D). FES utilizes electrical currents to activate nerves in areas of a patient’s body (i.e., arm and leg muscles) affected by paralysis, stroke, traumatic brain injuries, and other neurological disorders to restore some movement and function. Most FES devices have similar components––electronic stimulator, a feedback or control unit, leads/sensors, and electrodes– and can range in size from as small as a calculator to as large as a computer workstation. Perhaps the best-known FES system is the pacemaker for the heart.
FES treatment is accomplished by placing electrodes on–or surgically implanting them under—the patient’s skin close to peripheral nerves that control specific muscles or muscle groups. The electrodes (self-adhesive or gel-type) are connected by leads to an FES device (i.e., portable FES electrode unit) that generates low-voltage electrical impulses. These impulses excite the nerves causing the paralyzed muscles to contract, thereby facilitating basic movement. In some FES applications, tissues instead of muscles may be targeted. Read the rest of this entry »
Do these star-shaped cells promote spinal repair or do they just cause pain?
By Earline Gilley
When you think of the spinal cord, you may automatically think of neurons. It’s only logical to think that the repair and replacement of damaged neurons would be key to curing spinal cord injury (SCI)-related paralysis. Until very recently, however, it had long been thought that neurons, unlike skin and blood cells, for example, could not regenerate. But conventional wisdom has been proven wrong.
In the past two decades, researchers have found that there are indeed adult neural stem cells that can be used to grow new neurons. They are not easy to find and they do not regenerate the way that skin and blood cells do. As medical research delves deeper into the complexity of the central nervous system in an effort to harness these stem cells and revolutionize the treatment of paralysis, researchers are sometimes confronted with difficulties that show how far we still have to go. Read the rest of this entry »
Disability rights activists make some news getting arrested for the cause. But is anyone in Washington listening to the call for more affordable adaptive housing?
By Amy Meisner-Threet, MSW
“I’d rather go to jail than die in a nursing home.” That was just one of many chants heard resounding in the nation’s capital as more than 200 protesters, including this reporter, from ADAPT (Americans Disabled for Attendant Programs Today) came together for political action September 12 to 16.
We descended upon Washington, DC, from all over the United States with a clear message: We need accessible, affordable, integrated housing! That’s “we,” as in we who, due to significant disabilities, require housing that enables us to live independently. Read the rest of this entry »
With the election of Obama and a stronger Democratic majority in both the House and the Senate, many people in Washington have heightened hopes for disability policy issues.
On the other hand, increased money for programs is likely to be sparse. The Obama Administration and Congress are facing serious economic conditions that will hamper their ability to make all the changes they would like to make. Also, many of the new members of Congress are concerned about growing deficits and are likely to join the Blue Dog Caucus of fiscally conservative Democrats. Both Obama and Congressional leaders are talking about another economic bailout and a second economic stimulus bill. The one earlier this year gave most taxpayers a $600 stimulus payment. The costs of both will make it harder to increase money for programs.
First 100 Days: The Consortium for Citizens with Disabilities (CCD) has recommended disability policy priorities for the first 100 days of the new Congress as well as policy recommendations for whomever was elected President. These recommendations cover such diverse topics as transportation, education, prevention, employment, long-term services and supports, Social Security disability programs, and health care. Read the rest of this entry »
The dramatic upheavals in our economy are bringing changes to every aspect of our lives. We see it in our mortgage options, our personal spending budgets and of course our travel plans. Last issue we discussed making the most of your buck, taking one-tank trips, trains or cruises in lieu of paying higher airline prices.
Many frequent travelers have begun cutting down their options for travel during the upcoming holidays for fear of increasing gas prices and airline costs. But as we enter fall and draw closer to winter and peak travel season, it seems the airlines are just as worried about their economy as we are about ours. Instead of increasing their ticket prices as originally announced earlier this year, they are being good about keeping their prices low and even offering last minute deals. Because of the early announcements on airfare increases however, travelers began snatching up tickets like hotcakes, and although prices haven’t increased, availability over the holidays is slipping away quickly in most markets. Read the rest of this entry »
Michael Anderson has a story to tell. A part-time wheelchair user, 8 years ago, he had a house built for his wife and himself. Anderson lost his right leg in a hunting accident when he was 28. His wife Marilyn uses a wheelchair as a result of a car accident. He says he worked with the architect and other people in designing an accessible house. Four months after the builders started, Anderson and his wife visited their house for the first time since it was started. What they saw stunned them both.
“Not a single accessibility feature had been incorporated into the house,” says Anderson.
For example, the garage doors did not automatically open using a remote control. The bathtub was not wheelchair accessible. The counters in the kitchen were inches higher than they were supposed to be. Some of the wall switches were too high to reach. As a result his wife could not reach anything from her wheelchair. Instead of a ramp, three steps lead to the front porch. Anderson says there were other problems.
Anderson called the builder, and they met days later. Anderson says it was an awfully tense meeting, and adds, “My builder had his lawyer there. I knew then, there was a fight brewing,” says Anderson.
Months later at an additional cost of $11,000 for making accessibility changes, Anderson and his wife moved into their home. He vowed never to make that mistake again. Anderson says the builder told him he lost the notes regarding accessibility.
“If we build another house, my husband and I shall visit it every day to make sure all the accessibility features and incorporated. We shall use an accessibility specialist,” says Marilyn.
One such specialist is Aaron Lema whose company is Simplified Disabled Housing (www.simplifieddisabledhousing.com). Lema’s motto is, “The belief that improving the quality of life of your fellow human beings through the capitalist system is the right way to succeed and improve one’s own quality of life.” Read the rest of this entry »
At age 42, in 1969, I was working the evening shift and said to a coworker, “Would you believe it? I got myself a part-time job three months ago and have been living on five or six hours sleep and feel great!”
He made no comment, but about a week later, I said to him, “I can’t understand it. If I hold an ice cube in my left hand, it feels ice cold. If I hold it in my right hand, it feels lukewarm.”
A few days later I was in the hospital with complete immobility on the left side of my body and not able to feel pain or temperature on my right side, all from my neck down to my toes.
When finally diagnosed with multiple sclerosis (MS), I was told by my neurologist to eat a healthy diet, stay moderately active, and get adequate rest with 8 hours regular sleep. There was no medication for MS in those days, and I followed his advice. In about 6 months I was relatively normal.
After that, I had a few mild flare-ups. Up fairly late one evening I decided to do some reading before going to bed. I sat down with an open book, rested my head on my left hand, and discovered that the left side of my face was completely numb. I closed the book calmly and went to bed. Although it was a good night’s rest, the next morning showed no change, the numbness was still there. I called the neurologist and explained what happened. Read the rest of this entry »
Last issue, I described a 2006 Mayo Clinic article presenting a 15-year follow-up study of 38 polio survivors in which the authors omitted data from their own two previously published articles, which found progressive muscle weakness and loss of ability in those very same polio survivors, and concluded “our polio survivors did not age any differently than a normal population.”
There is a more dangerous issue than the publication of twisted, truncated and tortured data in a little-read medical journal. The bigger problem is that the authors “published” their findings in a press release. So, when the media got hold of the distorted data, the headline generated was a dismissive, “People who survive polio in childhood will not suffer further effects later in life.”
Unfortunately, “publishing” research findings in media press releases is the new trend in medicine. Forget peer-reviewed medical journals. Just put your findings in a press release and wait for the reporters to start calling. Read the rest of this entry »
Louis Tenanbaum, Certified Aging in Place Specialist, recently wrote an article, “Benefits of Universal Design Model Homes.” He wrote, “If a picture speaks a thousand words, a walk through is worth a million pictures. Universal Design model home projects offer that walkthrough experience. They provide shared context so the Universal Design discussion can be rooted in a ‘bricks and mortar’ experience.”
If you’re near Wausau, Wisconsin, you have a chance to see such a model home for yourself on the campus of Northcentral Technical College. Its purpose is to demonstrate accessible house modifications and related furniture, fixtures, appliances, equipment and technology in a true residential living environment where visitors can take home information about everything in the house.
The Wausau house and surrounding landscape demonstrate numerous state-of-the-art accessible design and adaptive technologies that can be used to build or remodel a house to make independent living possible for people who might otherwise have to move to an assisted-living facility. Read the rest of this entry »
Despite guarantees promised us by the Americans With Disabilities Act way back in 1990, many Action readers feel they are being discriminated against because of their disabilities. A couple of letters reprinted here are good representatives:
One came from a woman I’ll call Ann (not her real name), who wrote:
“Discrimination?
“I am an avid Action reader, I had some questions regarding ADA in the workplace. Being on probationary status (new hire) at work, if I am fired while being sick and out of the office due to my disability, do I have any rights?”
To answer her question, I consulted with a disability rights attorney who preferred to remain anonymous. Read the rest of this entry »
Speak up for yourself—politely. I strongly encourage everyone to do this, whether you have an SCI or not. But considering how many of my brothers and sisters with disabilities share stories about their “missed opportunities” with me on this subject, I feel compelled to extend my two cents especially to you.
Let’s begin with people offering you help, whether it be inside your home with family and friends or outside your home in the company of perfect strangers. Whether you like it or not, people are going to offer to help you, so get used to it. If you are approaching a door that needs to be opened, are shopping in a grocery store, navigating puddles or maybe even snow, or maybe even trying to get your wheelchair into your car, most people are going to want to help you. Whether or not you choose to accept this help is perfectly up to you, but please make a vow to yourself that you are going to be nice and either accept graciously or decline just as graciously. Read the rest of this entry »
It’s December again. Whether you observe Hanukkah, Kwanzaa, Christmas, or other winter holidays, gift giving and receiving may be part of your celebration. Choosing which gifts to buy or make for the relatives and friends on my list has always been a challenge for me. The bigger challenge, though, has been writing thank you notes for some of the strange—and, let’s face it—not always welcome gifts I’ve received. It’s hard to come up with sincere gratitude for something like a box of soap shaped like hippopotamuses.
The other day as I was working on my Christmas gift list, I tried to think of what my most unusual gift ever was. There were many contenders. But my mind immediately focused on the one I received from Aunt Georgie the year I turned 14. She and my uncle lived in Paris, so her gift traveled a long way. I couldn’t wait to open it. But I held it first, letting my imagination run wild. Perhaps the box contained a silk scarf or French jewelry or a book filled with French art.
Finally I tore open the box, dove through layers of tissue paper, and pulled out…two undershirts and two pairs of underpants, covered with rabbits wearing spacesuits. Their ears stuck out through holes in their space helmets. Maybe I would have been more grateful if the underwear was at least made in France, but the tag showed it had been made in Japan or Singapore—someplace else.
If you missed this segment on 60 Minutes last night on computer brain interface technology, the story and video are available here.
From the 60 Minutes website:
(CBS) Once in a while, we run across a science story that is hard to believe until you see it. That’s how we felt about this story when we first saw human beings operating computers, writing e-mails, and driving wheelchairs with nothing but their thoughts.
Quietly in a number of laboratories, an astounding technology is developing that directly connects the human brain to a computer. It’s like a sudden leap in human evolution - a leap that could one day help paralyzed people to walk again and amputees to move bionic limbs. As correspondent Scott Pelley reports, the connection has already been made for a few people, and for them it has been life changing.
For more information on this technology, see this article that previously appeared in Action.
On September 19-20, the 8th Annual Major League Wheelchair Softball Tournament set the stage for another round of classic battles between Major League Baseball (MLB)-sponsored wheelchair softball teams from around the country. This year’s participants included the RIC Cubs, New England Rolling Red Sox, United Spinal Mets (Black), United Spinal Mets (White), and United Spinal Yankees, all of which fought valiantly for the coveted “Kelly Cup” trophy, named after United Spinal’s former executive director Gerard M. Kelly. Read the rest of this entry »
United Spinal was excited to be a supporting partner in the first annual RealAbilities New York Disabilities Film Festival. Presented by the Jewish Community Council (the JCC) with support from The United Jewish Appeal Federation, the festival presented seven films, two documentaries and one short at eleven different venues in New York City and its surrounding suburbs. Over 1200 moviegoers attended the three-day festival, a sign of both the hunger and support for films created by people with disabilities, starring them, or at the very least offering realistic portrayals of our lives.
This focus was a success, with stars like Sigourney Weaver giving a moving performance as an autistic woman dealing with personal tragedy in Snow Cake, while Mat Fraser (who has phocomelia) and three-foot six Lisa Hammond formed a groundbreaking couple in the romantic crowd-pleaser Every Time You Look at Me.
“We hope to raise awareness of the issues facing people with disabilities while also providing an outlet for artists with disabilities to showcase their work,” said festival codirector and cofounder Isaac Zablocki. “We’ve already begun planning for next year’s festival and hope to receive financing and sponsorships that can help us grow this important event,” Zablocki continued.
In addition to screenings of high-quality work, the festival offered meaningful interactions between festival-goers and creative personnel from almost all of the festival’s entrants. The second day of the festival was highlighted by a Q&A session with Ms. Weaver herself. The time she gave to the audience and the probing questions regarding disability and film made for a very rewarding experience.
With content concerning a wide variety of disabilities and work produced by members of the disability community itself, the RealAbilities Film Festival is off to a great start. The Festival should become a staple of both the film and disability communities in coming years. At United Spinal, we look to continue our support of this outstanding event.
A researcher at Massachusetts Institute of Technology’s (MIT) Picower Institute for Learning and Memory has pinpointed stem cells within the spinal cord that, if persuaded to differentiate into more healing cells and fewer scarring cells following an injury, may lead to a new, nonsurgical treatment for debilitating spinal cord injuries.
The work, reported in the July issue of the journal PLoS (Public Library of Science) Biology, is by Konstantinos Meletis, a postdoctoral fellow at the Picower Institute, and colleagues at the Karolinska Institute in Sweden. Their results could lead to drugs that might restore some degree of mobility to the 30,000 people worldwide afflicted each year with spinal cord injuries. Read the rest of this entry »
James Weisman
SVP & General Counsel
United Spinal Association
Power wheelchair users take notice – a Federal District Court in Vermont has decided a case against a power wheelchair user which is a sign of things to come.
As part of United Spinal’s www.rightwheelchair.org website and our campaigns to reform systemic practices which make it difficult to obtain high tech wheelchairs we’ve indicated that third party payers including private insurance companies, state Medicaid agencies and the Dept. of Veterans Affairs will emulate Medicare if we allow the agency to deny people necessary equipment.
It’s happening and here’s a good example: the plaintiff in the case, Richard Durgin, sued Blue Cross Blue Shield of Vermont (BCBS). Mr. Durgin’s doctor had prescribed a motorized chair with a “standing” feature. Mr. Durgin operates a small business and buys his own health insurance. Read the rest of this entry »
President George W. Bush signs the Americans with Disabilities Amendments Act Thursday, Sept. 25, 2008, in the Oval Office of the White House. Joining him for the signing of the law that amends the ADA Act of 1990, are, from left: Former President George H.W. Bush, Republican Rep. James Sensenbrenner of Wisconsin and his spouse, Cheryl Sensenbrenner; Democratic Rep. Steny Hoyer of Maryland; Republican Rep. Buck McKeon of California; Democratic Rep. Jerry Nadler of New York; Senator Tom Harkin (D-Iowa); Senator Mike Enzi (R-Wyo.); Democratic Rep. Jim Langevin of Rhode Island, and U.S. Attorney General Michael Mukasey. White House photo by Joyce N. Boghosian
On September 25th, President George W. Bush signed into law the ADA Amendments Act of 2008. The ceremony took place in the Oval Office in the presence of House and Senate ADA champions and the president’s father, George H.W. Bush, who signed the original ADA in 1990.
The ADA Amendments Act tells the courts that the way they have been interpreting the ADA leaves out the very people it was designed to protect: Americans with disabilities. Read the rest of this entry »
On September 24, United Spinal Board member Lex Frieden asked for assistance in support of people with disabilities affected by Hurricane Ike. He urged friends and colleagues to provide funding to establish a call center so that people with disabilities can be routed to appropriate services in the affected area. United Spinal’s Board of Directors responded this morning with a $10,000 donation. Please see Lex’s touching account of how the funds will be used and consider making a donation.
Email from United Spinal Board member Lex Frieden:
Dear friends: Under ordinary circumstances, I would never impose on friends to request a contribution to something on which I was working. I know that all of you have your own charitable commitments, and I respect that. However, these are not ordinary circumstances in Southeast Texas.
Though the national media has generally stopped covering the story of Hurricane Ike, more than a million people are still without power, a quarter of a million homes in our city are still without running water, and thousands of young and old people with disabilities are trying to maintain their health and their independence in the face of the most challenging circumstances. Read the rest of this entry »
