Giving Thanks

Remembering Jeff Shannon; A re-post from November 2013.

FB profile (3)Jeff was a veteran writer on disability issues, a longtime movie reviewer and film historian as well as a regular contributor to Jeff was also a C-5/6 quad, who was injured in 1979 at age 17. We are proud to have the thoughtful, provocative and honest voice of Jeff Shannon, and in his memory, would like to share his 2013 Thanksgiving FacingDisability blog post, “Giving Thanks on the 2-for-1 Plan.”

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BLOG – What SCI Family Caregivers Need to Know

It’s been one year since President Obama declared November National Family Caregivers Month to, “salute the people who care for their loved ones while protecting their dignity and individuality.”

Family.CaregiverWith a spinal cord injury (SCI), it’s often a family member who takes over the caregiving when a person leaves the hospital. It’s a big life-change for everyone. The individual is no longer a patient, yet often has urgent medical needs that are not going away any time soon — if ever. Life for the newly paralyzed person has changed so much that they need someone around who knows just as much about their heart as their injury. Sometimes, a family member is the only one who fits the bill.

SCI caregiving has difficulties of its own. And while they vary with the individual, here is a useful summary, put together by the National Caregivers Library, of the emotions commonly experienced after spinal cord injury:


  • Feelings of dependency may cause your loved one to withdraw; the idea of losing even the smallest bit of autonomy can be almost intolerable.
  • He or she may think they’ve become a burden to you and others. They may feel they’re pulling everybody down, and the family would be better off without them.
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BLOG – Trick or Treat — In a Wheelchair

Everybody loves Halloween and the idea of trick-or-treating – adults included. Children with spinal cord injuries can join in the fun and even incorporate their wheelchair into their costumes. Here are some special considerations:

For a kid that rolls, almost any costume can be made wheelchair-friendly. co. And they don’t have to be expensive to be fun.Screen Shot 2015-10-26 at 2.28.00 PM

Kids can opt to be anything from vampires to royalty. For your little princesses, a wheelchair can be made into a magic coach or fancy limousine. For those sporty ‘lil guys, a wheelchair can be a fast fantasy car or a speeding train engine.

A wheelchair makes a great accessory to a conductor’s costume or even an astronaut’s costume. There are no limits but your imagination. Continue reading

BLOG – Sex After Spinal Cord Injury

Extensive Online Resource Updated
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Dermatome map indicates the spinal nerves that control specific sensory areas

A recent update to Wikipedia’s entry on “Sexual Function After Spinal Cord Injury” has created a valuable online resource on the subject. The article is a collaboration of experts in the field of sexuality after SCI, and contains findings from clinical researchers and scholarly input from such sources as the Mayo Clinic and the Journal of Spinal Cord Medicine, Journal of Neurotrauma and Human Reproduction.

The easy-to-understand article begins by exploring how SCI impacts the quality of sexual function, and goes on to cover such subjects as how complete vs, incomplete injury affects sexual ability and satisfaction, how sensation and performance are Continue reading

BLOG – Dr. Lawrence C. Vogel is Co-Editor of a New Book on Pediatric SCI

Spinal Cord Injury in the Child and Young Adult

Children with SCI need specialized care throughout their childhood and teenage years.  Screen Shot 2015-10-01 at 1.04.44 PMHowever, because spinal cord injuries are relatively rare, few pediatricians have experience in the care that children need.

Spinal Cord Injury in the Child and Young Adult covers the vast territory of pediatric SCI treatment in one place. According to Dr. Vogel, chief of pediatrics and assistant chief of staff at Shriners Hospitals for Children — Chicago, and a professor in the department of pediatrics at Rush Medical College, children with pediatric-onset SCI face health system gaps, especially in the transition from pediatric to adult care and the conversion from parent-controlled health care to self-management.

The book is intended for clinicians of all disciplines who may only occasionally care for youth with SCI. But it’s also helpful to those who specialize in SCI as well as clinical and basic researchers in the SCI field. Topics include; new developments in pediatric SCI research, current standards for optimal care, areas lacking scientific evidence, and recommendations for clinical practice and future research.

We interviewed Dr. Vogel about his book:

Q: What are some of the new developments in pediatric SCI research?

Dr. Vogel: We are studying the psychosocial development of kids with SCI throughout their lifespan including their outcomes as adults, plus looking at their caregivers and the mutual impact that caregivers and kids with SCI have on one another.

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Lawrence C. Vogel, MD, FAAP, CLCP

We are [also] working on ways to evaluate outcomes (such as activity, participation, neurological and functional status) that are appropriate for children of different ages, and that hopefully can be used to track their progress throughout their lifespan.

In respect to mobility, both power and manual wheelchairs appropriate for children as young as one year are becoming available. It is critical we assure that kids of all ages have the means to be mobile in their community so that they may fully participate in society.

Q: What are some of the more difficult, or unknown factors children with SCI face as they transition to adulthood? Continue reading

BLOG~Back to School: Stories of Success on Campus

Our Article Appears in "New Mobility Magazine" this Month
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September, 2015 Issue

Going to college is a major life change for anyone, and it may present an especially daunting challenge for wheelchair users. Yet students who use wheelchairs frequently report they can usually find their way around accessibility problems. The main issue, they say, is figuring out how to make the “back to school” transition.

The back-school-article, which is featured in the latest issue of “New Mobility” magazine, was written by FacingDisability’s Executive Producer, Stephanie Lollino. It focuses on how students with SCI prepare themselves to attend a college or university whether they’re staying in town, or attending a school hundreds of miles from home.

“Once you’ve set the goal that you’re going to do it,” says Kris Cichowski, founding director of the LIFE Center at the Rehabilitation Institute of Chicago, “make sure you’re medically ready. Do you have your care down? And maybe that doesn’t mean you do it yourself, but can you instruct other people? Have you put yourself out in the community? Tested the waters? I don’t think there’s ever a time you can say, ‘Yes, I’m totally ready right now,’ because a lot of times you have to jump off and see how it works.”

Following are stories of people who took that jump and discovered they handled college just fine. Continue reading

BLOG ~ ADA at 25: The Changing Face of Disability

Guest Blog by, Marca Bristo

Disability rights leader Marca Bristo, founder and CEO of Access Living of Metropolitan Chicago, wrote this commentary which appeared in the “Chicago Tribune” for the 25th anniversary of the Americans with Disabilities Act.  It’s an important summary of the advances brought by the ADA and what still remains to be done.


For people with disabilities, 25 years under the ADA has opened a new world


Marca Bristo

One day when I was 23 years old, back in 1977, I was hanging out at Lake Michigan when my friend’s dog knocked my shoes in the lake. I dove in to retrieve them and broke my neck, leaving me paralyzed from the chest down.

It didn’t take long to realize my world had changed. People immediately treated me differently because of my wheelchair — I lost my job as a nurse, I lost my home, I lost my health insurance. I couldn’t use public transit, and I couldn’t get into many public places without entering through the service entrance — that happened more times than I care to remember.

America in 1977 was a completely different country for those with disabilities. The prevailing message I kept hearing was that I needed to “adjust to my disability.” It never occurred to me that society had it wrong. In spite of my activist spirit and the historical civil rights context in which I was raised, I was on my own to “cope” with this new reality. Continue reading

Blog ~ Mothers on Wheels

Pregnancy After Paralysis

The desire to be a mother is an impulse that begins in childhood for most women. But once a spinal cord injury occurs, many women assume having a baby is just not in the cards for them. They are concerned that their bodies can’t handle a pregnancy, or that they can’t be a good parent because they’re in a wheelchair. However, the truth is that women with SCI are able to carry babies to term, and to become incredible mothers.





A new fact sheet on pregnancy and SCI that was just published by the Model Systems Knowledge Translation Center (MSKTC) highlights these facts:

  • Having a spinal cord injury does not affect your ability to naturally become pregnant or to carry and deliver a baby. It’s easy for a woman with paralysis to become pregnant.

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BLOG ~ Videos in Chinese

SCI information spreading across the world

Does a spinal cord injury have a language barrier? When it comes to paralysis, the SCI Foundation in Taiwan doesn’t think so. The group has translated 20 videos from into Chinese and is featuring them on its new website.

On a recent trip to Canada to attend an SCI conference, the Taiwanese group learned there

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An image from the Taiwanese website

were many international groups searching for an alliance. CEO, Hsin-Ping Hung, said he was inspired during his trip by the people he met, and the new developments in SCI outreach and awareness. He and some of his dedicated colleagues have developed a website Continue reading

BLOG ~ Paralyzed Officer Retails Applesauce

Incredible Recipe Was His Mother's

Jim Mullen as a young police officer

It’s been nearly 20 years since a violent accident happened to Jim Mullen, a city of Chicago police officer, resulting in quadriplegia. A young father at the time, and only beginning his life, Jim says he tried always to look on the bright side. “My new reality inspired a passion in me,” He says, “to show everyone that life is what you make out of it. Ever since that day, I’ve remembered that dreams are worth chasing.”

Jim’s dream manifested itself in the form of love for his mother’s home cooking — especially her homemade applesauce. “Even when I was 12 years old, I referred to it as apple pie without the crust. With a little encouragement, Jim convinced his mother, Continue reading