At age 17, Phoebe was diagnosed with Stargardt’s Disease (also known as Juvenile Macular Degeneration), a disorder that results in the loss of central vision. Her first indication of trouble occurred while she was a senior in high school in Atlanta, Georgia. Phoebe, an accomplished violinist, began to have difficulty reading sheet music. Seeing the board in class and reading books also became major challenges. Initially, her ophthalmologist thought she simply needed a new eyeglass prescription. When stronger glasses didn’t help, Phoebe went to a specialist at Emory University, where she was given the Stargardt’s diagnosis.

The knowledge that she was losing her sight was life-changing for Phoebe. Though she no longer expected to have a career as a violinist, she did attend college at Southern Methodist University in Dallas. While there, Phoebe used closed-circuit television (CCTV) to read books and a software program called ZoomText, which reads the text on the monitor out loud, to use the computer. Assistive technology combined with Phoebe’s strong will to succeed, allowed her to graduate with a Bachelor of Arts degree in international relations and German studies. She later earned a Master of Business Administration degree from Georgia State University and worked in marketing with a large corporation for several years.

Phoebe’s interest in mosaic art developed in 2004, after she moved to San Antonio. The home in which she was living at the time had a raised garden with concrete planters. Hoping to make the planters more attractive, Phoebe set about learning how to mosaic. With the aid of binocular glasses (similar to jeweler’s glasses) and a keen sense of touch, Phoebe became an avid mosaic artist. Seeing her wonderful work in the yard, friends and neighbors soon began ordering pieces for themselves. These days, Phoebe regularly donates her work to retinal disease charities.

The challenges presented by Stargardt’s Disease are many. Even so, Phoebe has adapted. Not only has she earned two degrees and had a successful career, but she has also embarked on a totally new path as a mosaic artist. Rather than focusing on what might have been, Phoebe has chosen to live in the moment. According to Phoebe, “I make a conscious decision every day to be happy and to make it a good day.” In doing so, Phoebe has brought joy to others through the beauty of her work.

James Meadours: Self-Advocate

San Antonio is proud to welcome James Meadours as one of its newest residents. James is a nationally-known self-advocate, who is employed by Disability Rights Texas, the legal protection and advocacy agency for Texans with disabilities.

Even as a child, James recognized the importance of self-advocacy. As a fifth- grader living in Louisiana, James was a die-hard New Orleans Saints fan. One day, Archie Manning, the star Saints’ quarterback, visited the fourth- and fifth-grade students to talk, sign autographs, and play catch. James, who was forced to take a second-grade adaptive PE class, was not allowed to attend. Afterwards, he complained to his mother that this wasn’t right. The following day, the PE teacher scolded him for protesting. Though he didn’t get to meet Archie Manning, this experience impressed upon him the importance of speaking up for yourself when faced with injustice.

As an adult, James first became involved with advocacy work in 1990 while living in Oklahoma. At the encouragement of a staff member from the Arc, he began to attend a group that provided information to participants about issues such as voting and living in the community. Before long, James became the first person with a disability elected to serve on the board of directors at the Arc of Tulsa. In this role, he became very knowledgeable about public policy issues and began travelling regularly to the state capitol in Oklahoma City to meet with senators, representatives, and state agency personnel about matters of concern to the disability community.

Advocacy became James’s full-time occupation in 1995, when he left his job at a clothing store to become a Volunteers in Service to America (VISTA) volunteer. During his two years with VISTA, James travelled throughout Oklahoma in an effort to increase membership in local self-advocacy groups.

As a testament to the importance of James’s years of involvement in helping to advance the interests of people with disabilities, December 9, 1996, was proclaimed James Meadours Day in Oklahoma. Before receiving this honor, James did not realize the impact that his efforts had on others. He likens his new-found awareness to the awakening experienced by George Bailey in It’s a Wonderful Life.

Since that memorable day, James has continued to devote himself to helping others find their voice. In his current position as a Self-Advocacy Specialist, James is involved with many projects. He is working with the San Antonio League of Self-Advocates (SALSA), an organization composed of individuals with disabilities who promote their human and civil rights, to help motivate others to join the group. James is also striving to educate those with disabilities about their rights under the Help America Vote Act of 2002 (HAVA). This act, which was passed in the aftermath of the 2000 presidential election in Florida, ensures that voters with disabilities are provided with secret ballots and access to the polls.

More generally, James is a frequent public speaker. In his speeches, he advises families on the importance of planning for the future, encourages assertiveness, and helps youngsters to recognize their potential. Though James often receives many positive comments after his presentations, he was especially touched by a letter he received from a teenager who heard him speak at her middle school. This girl, who suffered from an eating disorder, wrote to James to thank him for helping her to realize that she is a worthwhile person. His message proved to be an important first step in her recovery.

James’s work is central to his life, but he always makes time for his favorite hobby, slot racing. Indeed, the presence of a track in San Antonio has helped him to feel at home here. James appreciates the opportunity for relaxation among people who treat him as "one of the guys," not as a disabled person.

We in the Alamo City are fortunate to have James as a fellow San Antonian. In this difficult economic climate, which requires that tough choices be made, the need for people who can inspire others to speak out for themselves is paramount. James Meadours, a man who is passionate about improving the lives of people with disabilities, is such a person.

---

LeVan:  Creator of the Multiple Sclerosis Symptom Experience Kit Program
By Annette Jennings

Jinjer LeVan is a true entrepreneur. In 1991, she was diagnosed with multiple sclerosis (MS), a disabling neurological disorder. Prior to her diagnosis, she experienced a 20-year search for an answer as to why she was having seemingly unrelated symptoms – including migraines, eye pain, fatigue, numbness, and spasms. After diagnosis, she realized how little is publically known about MS, and how the invisible symptoms of this disease affect public opinion of a person’s health. The most common comment is "but you look so good," which gave her the idea of finding a way to make the invisible symptoms visible.

In 2008, she had the opportunity to apply for an entrepreneur grant from the MS Society and the Kanaly Trust Foundation. She developed a kit that included items to simulate some of MS symptoms with easy-to-find items such as gloves, shoes, swim fins, and eye glasses with partially covered lenses. The kit also includes everyday items such as button shirts, shoes with laces, a peg game, cards, wallet, cell phone, and more. By wearing gloves and trying to do activities such as tying a shoe lace or buttoning a shirt, people come to understand how difficult basic self-care tasks can be for people with MS. Walking with flippers mimics walking with "drop foot," a condition common to people with MS. Wearing the glasses provides the experience of having impaired vision from optic neuropathy. The main purpose of the kit is to raise awareness, and it’s working. Since being awarded the first grant in 2008, she has received two more grants to make 16 additional kits. Jinjer has travelled throughout Texas providing demonstrations for thousands of individuals at nursing and medical schools, corporations, businesses, various support groups, and health fairs. In 2008/2009, she reached 4,539 people. Last year, she reached 5,976, and she trained several volunteers who offered demonstrations to another 4,458 people. More important to her than the numbers, is the actual impact the kit has on a personal level.

Many people who have "tried on" MS have said, "I get it now. I understand how my family member feels." Others, who have MS themselves, have commented, "This is what life is like for me. Thanks for letting people know." It’s comments like this that let her know the program is working. Jinjer shares one experience about a teenage boy diagnosed with MS who was so excited about the symptom kit that he hurried to get his mother. He wanted her to see for herself what it was like for him to have difficulty walking or to be so fatigued that it was hard to do even simple jobs. On mornings when it was tough for him to get out of bed, his mother would sometimes become angry, thinking that he was just being lazy. When she experienced first-hand what it was like for her son, her attitude toward his behavior changed dramatically. The experience allowed her the opportunity to really see her son.

Looking to the future, Jinjer plans to provide information on the internet that will allow others to assemble kits like hers. She’s done the trial and error, and knows what works and doesn’t work. Her hope is to save others from the need to reinvent the wheel, and hopes to bring uniformity within the MS community. This will allow people all over the world to increase awareness about MS. What began 3 years ago with Jinjer’s dream to develop a simple kit, has now grown into a program that has the potential to help people well beyond the boundaries of San Antonio and the Lone Star State.

Bobby Henline: Iraq War Veteran, Comedian, Motivational Speaker
By Annette Jennings

On April 7, 2007, during his fourth tour in Iraq, the Humvee in which U.S. Army Staff Sergeant Bobby Henline and four others were riding struck a roadside bomb. Bobby, the only survivor, sustained burns over 38% of his body and lost the use of his left hand, which later had to be amputated. In total, Bobby has endured more than 40 surgeries to address his injuries.

Throughout his ordeal, Bobby has used humor as a way of coping. While a patient on the burn unit at Brooks Army Medical Center, staff members, who had witnessed first-hand his ability to make others laugh, encouraged him to do stand-up comedy. Although reluctant at first, he gave it a try and loved it. Today, he performs regularly during open mic sessions at the River City Comedy Club and Laugh Out Loud.

Comedy has proved to be a terrific way to increase awareness. Bobby’s goal is to help others see burn survivors as people who, despite their appearance, are like other people.  By joking about how he looks, he also hopes to help burn survivors become more comfortable with themselves. It is Bobby’s belief that “with laughter comes healing.”

Much to his surprise, Bobby has discovered that simply telling his story is yet another way to promote healing by providing others with the inspiration to overcome obstacles in their lives.  To this end, he speaks frequently to students, veterans, and people with disabilities. Recently, Bobby was the keynote speaker during Veterans Day celebrations at the Ronald Reagan Presidential Library in Simi Valley, California. According to Bobby, “If I help only one person out of a thousand, then what happened to me was worth it.”

In surviving a horrific explosion, Bobby Henline says that he has been given a gift. Through his comedy and public speaking, he has chosen to share the gift of his life with others. In so doing, he has helped countless people to change their lives for the better

Artist Len Hernandez
By Annette Jennings

Len Hernandez, 39, is a big man with a passion for art. He and his wife Barbara, along with their two poodles, moved to San Antonio from Liberty, Missouri, two years ago. One year prior to their move, Len, who has had difficulty with his back for the past 10 years, experienced a sudden change in his condition that rendered him unable to control his legs beneath the knees.  As a result, he now uses a wheelchair for mobility purposes. 

With intensive therapy and the support of family and friends, Len has been able to continue with the work that he has been doing for the past 18 years. As a manager for the largest theme park concessionaire in the world, Len hires and trains the artists who draw caricatures, airbrush shirts, and apply temporary tattoos and face paints. He also works as a tattoo artist at a local tattoo studio. Though Len’s artwork is much the same now as it was before he came to use a wheelchair, he has recently identified a potential new outlet for his creative talents as a designer of custom wheelchairs. According to Len, “I am also looking to break into the wheelchair business as a designer, specifically designing cool wheelchairs for all sizes that not only make life easier for the user, but fun!”

As a large man himself, the issue of size has special significance for Len.  His motivation to design wheelchairs for both big and small users stems from his own difficulties in obtaining a chair. After a long search, during which time he was forced to use a chair poorly designed for someone of his size, Len finally located a company that makes wheelchairs for people weighing up to 400 pounds. Having injured his shoulders and elbows using his previous chair, Len’s enthusiasm for his new chair is evident as he describes the relative ease with which he now goes about his daily activities.

Len is also concerned about the lack of access to water activities for people who use wheelchairs. He feels that the aquatic therapy that he received in Kansas City during the year preceding his move to San Antonio contributed significantly to his progress. Len is excited about the eventual opening of an accessible pool featuring zero-grade entry at the Pam Stephens Center, but laments the scarcity of such facilities in the Alamo City.

For those interested in seeing Len at work, he will be drawing caricatures free of charge at AccessAbility Fest, which will be held at Morgan’s Wonderland on Halloween Day. 

To learn more about Len and his art, you may visit his website at http://www.lenhernandez.com/.

Elaine Jordan’s history with psychiatric illness has been a difficult one. Having been diagnosed with severe anxiety and depression, she had major episodes in 2000 and 2005 that left her unable to leave the house for months at a time. Due to the effects of her illness and medication,  Elaine would sleep as long as 20 hours a day. Her ability to participate fully in activities with family and friends had been taken from her.

While surfing the web in 2006, Elaine became aware of psychiatric service dogs. This discovery has proven to be life-changing for her. She and her Belgian sheepdog, Destry, trained for 2 years. Though Elaine occasionally had second thoughts about using a service dog due to fears of being seen as disabled, she persisted. Now, among his many commendations, Destry is certified as a “good canine citizen” by the American Kennel Club. His pleasant disposition has made Destry very popular, but the quality that Elaine most appreciates is his uncanny ability to read her emotions. 

Destry is able to sense an impending anxiety attack and alerts Elaine by engaging in “intelligent disobedience.” Normally, Destry will lay at her feet, but prior to an anxiety attack, he will lay his head in her lap. Due to Elaine’s trust in Destry, she will take medication to lessen the effects of the attack before it actually occurs. Having a service dog has also made it possible for Elaine to benefit from breathing exercises. Before Destry came into her life, Elaine had great difficulty focusing and was unable to do the exercises. Destry provides her with a focal point. Elaine concentrates on his breathing pattern and the beating of his heart, which enables her to adjust her own breathing pattern. His gentle nature has a calming influence on Elaine. 

When Elaine dissociates (enters into a dreamlike state), Destry is there to bring her back to herself. He does this by repeatedly butting his nose into her head until she returns to awareness. Elaine, who suffers from agoraphobia, now finds it easier to leave the security of her home. Because Destry provides a buffer against people crowding her in public, Elaine has more confidence in herself. Indeed, Destry has become more than a service dog or a pet to Elaine. Through his devotion, he has become her friend, offering unconditional love in the good times and the bad.

Elaine credits Destry with giving her life back to her. She is once again able to enjoy camping, swimming, and horseback riding.  With Destry as her companion,  Elaine is able to fly and has visited places such as the Grand Canyon and Washington, DC. On a daily basis, she holds a part-time job and finds it much easier to do household errands and tasks. Of Destry, Elaine says, “He allows me to be me again.”

When asked what advice she has for those considering having a psychiatric service dog, Elaine had three recommendations. First, consider whether or not you are capable of taking care of the dog. According to Elaine, “Taking care of your service dog is as important as having one. It is part of the bonding that needs to take place and part of the therapy….” Second, be aware that there are few schools available to assist with training a psychiatric service dog. The training is time consuming and can involve considerable expense  for the owner. Finally, be prepared to answer questions. People are curious  about service dogs and may ask what you consider to be rude questions regarding the nature of your disability.

For a more complete understanding of the relationship between Elaine and Destry from Destry’s point of view, you can read his journal at www.dogster.com/dogs/309209. If you would like to learn more about psychiatric service dogs, you may visit www.psychdog.org.

Submit stories about people with disabilities, their accomplishments and contributions to our community at info@disabilitysa.org.