Remembering the Victims of the Emanuel A.M.E. Church Massacre

It’s been almost one week since nine people innocently lost their lives while in Bible study last Wednesday. All of these people were active in their communities and enjoyed spreading the Word of God. It is disheartening to see bad things happen to good people.

Rev. and Sen. Clamenta speaking at a Blue Jamboree rally.

Rev. and Sen. Clamenta speaking at a Blue Jamboree rally.

I didn’t know any of the victims well, but I had the opportunity to photograph Reverend and Senator Clamenta Pinckney at the 2013 Blue Jamboree, a Democratic Party rally held in North Charleston. He definitely had a deep, booming voice that commanded the attention of the crowd.

The outpouring of support by the Charleston community, the state of South Carolina and our entire nation is incredibly heartwarming. To drive past “Mother Emanuel” and see all the people who are paying their respects with flowers and cards shows how this tragic event has shaken the core of the human spirit.

Let us continue to pray for the family and friends of Cynthia Hurd, Susie Jackson, Ethel Lance, DePayne Middleton Doctor, Clamenta Pinckney, Tywanza Sanders, Daniel L. Simmons Sr., Sharonda Singleton and Myra Thompson.

The cover of Sunday's (June 21) Charleston, S.C., Post and Courier newspaper. (Courtesy of Post and Courier)

The cover of Sunday’s (June 21) Charleston, S.C., Post and Courier newspaper. (Courtesy of Post and Courier)

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Handling the Heat and Humidity

Dog sitting in front of a fan with its ears blowing in the wind.  It’s not officially the dog days of summer yet, but Charleston is definitely feeling the heat! For some people with spinal cord injury, it’s difficult for us to regulate our body temperature and handle the hot, humid weather.

An able-bodied person can cool off through sweating, but, for those who are injured, the brain doesn’t communicate with the spinal cord when the body becomes overheated. Some signs of heat exhaustion are dizzines, weakness or feeling nauseous. When these symptoms are present, it’s best to go into an air-conditioned room or use fans.There are also several companies that make cooling towels that stay cold for several hours.

I usually try to beat the heat by packing a cooler with water and cold towels when spending the day outdoors. Placing cold towels on my arms and on the back of my neck help keep my body cool. Our bodies are similar to cold-blooded animals; we match the temperature of our environment. Much like alligators and other reptiles, we can go for a swim to handle the heat and humidity!

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Flying to and from Minnesota

I traveled by plane to Minneapolis with members of the MUSC spinal cord injury research team. We flew Friday morning from Charleston to Charlotte, then to the Minneapolis/St. Paul airport.

From the wheelchair, I get transferred to the aisle chair to go to seat on the plane.

From the wheelchair, I get transferred to the aisle chair to go to seat on the plane.

We were on a smaller plane leaving Charleston, which made it difficult to get my Permobil wheelchair into the cargo section. While my chair is getting loaded with all the luggage, I’m strapped to an aisle chair that is narrow enough to take me to my seat on the plane.

Our stay in Minneapolis went well. We rented a rampvan to get around the city, and the hotel room at the Hyatt was accessible. The bed height wasn’t too high for people in wheelchairs and there weren’t any bed frames or other obstructions around the bed that limited transferring from my wheelchair.

While visiting at the Mall of America, we stopped for dinner and went through the amusement park at the mall. Our return flight Monday afternoon from Minneapolis to Charlotte went well; however, a few of us missed the connecting flight!

We thought we had more time for the layover, but, apparently, we didn’t. The crazy part was that my chair made the flight without me. The chair was sent directly to the connecting flight. It’s usually faster to send my chair to the next plane via the cargo handlers. Fortunately, we were able to get the next flight home!

To ease the stress of missing the flight, we had one of the best skycaps, named Alisha, when we landed in Charleston. Alisha assisted with the entire process from getting me off the plane to reuniting me with my power chair that was waiting at baggage claim.

Even though there were some difficult moments on this trip, I couldn’t have done it without the people who traveled with me. A special thanks to Corey, Kristian, D’Andra, Melinda and Renee.

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Celebrating 40 Years of Spinal Cord Injury Research

40 Years of SCI Research LogoThis past weekend, I traveled to Minneapolis, Minnesota with the MUSC Longevity After Injury Project to celebrate 40 years of SCI (spinal cord injury) research.

Dr. Jim Krause, who also has a spinal cord injury, is the lead researcher at MUSC. Dr. Krause is from Minnesota and did his Ph.D. work at the University of Minnesota, which is why the event took place in Minneapolis.

The research study began in 1973 and has had 2,179 people participate over the years. This population completes surveys and provides information through focus groups every few years for researchers to track their quality of life, health outcomes and employment status since being injured. Participants range in age from 40-70 years old and have been injured an average of 26 years.

As part of the celebration, a couple focus groups were held and current research data was shared with attendees. We also had a picnic on the banks of the Mississippi River at the Nicolette Island Pavilion.  The banquet hall was in a remodeled train station and was spacious. It accommodated nearly seventy wheelchairs and 200 guests. The patio was accessible and had winding sidewalks that led down to the river’s edge.

It was inspirational and exciting to meet everyone and hear about their stories. The members are diverse in age, ethnicity and career fields, yet they all have positive, charismatic attitudes! We captured the event in photos and videos, and I will share them on my blog as soon as they are available. As I met with people, they all shared words of wisdom for the next generation of SCI survivors, which is to never give up!

Editor’s note: I will post a second blog about the logistics of flying to and from Minnesota later this week.

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Americans with Disabilities Act: 25 Years and Counting

Arnedra, Alex and Nathan   next to the ADA Legacy Tour bus.

Arnedra, Alex and Nathan pose next to the ADA Legacy Tour bus.

The 25th anniversary of the Americans with Disabilities Act (ADA) is being celebrated this year! To commemorate this legislation, the ADA Legacy Tour stopped in Charleston, S.C., to showcase the history of the independent living movement.

Photographer Tom Olin, who is also the bus driver, has captured iconic pictures where people with disabilities have fought for their civil rights.  During the ’80s and ’90s, many protesters would chain themselves to fences or crawl up steps to the Capitol Building. Often times, they would be arrested.

Protesters crawling up steps.

Protesters crawling up steps.

Since the passage of the ADA, progress has been made to improve access and quality of life for those with disabilities. Through advocacy and education, we all can make a difference! Thanks to everyone who came to support The Legacy Tour. Here is The Post and Courier’s article: http://www.postandcourier.com/article/20150601/PC16/150609893/1005/ada-legacy-tour-helps-promote-community-in-charleston

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Celebrating 25 Years of the Americans With Disabilities Act

ADA25 LogoAccessibility for people with disabilities probably wouldn’t be where it is today if it weren’t for the Americans with Disabilities Act (ADA). The ADA was signed into law July 26, 1990, by President George H.W. Bush.

The ADA is one of America’s most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life. The ability to go into restaurants, to drive my wheelchair down the sidewalk, to have accommodations in the workplace all would be different if the ADA did not exist.

This year, the legislation will be 25 years old. To commemorate this momentous occasion, the ADA Legacy Tour bus is traveling the country visiting cities to showcase iconic photos and milestones in the disability rights movement.

The tour will be in Charleston Monday, June 1. People can take pictures of the bus at White Point Gardens (The Battery) in downtown Charleston from 10:30-11:00 a.m. Later in the day, an ADA Expo will be held at North Charleston Riverfront Park from 4:00-7:00 p.m. The Expo will feature food music and fun! An ADA exhibit will be on display and several local disability organizations will be on-hand. See the flyer below for more details.

ADA Legacy Tour Flyer

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Does Your Disability Define You?

It is easy to describe someone by their disability, especially if the disability is visible. For example, I’ve been described as “the wheelchair guy.” There was even one instance where I was only referred to by the chair as in “let the chair through.” I don’t get mad often, but that was one time that was upsetting and surprising. I informed that person there was more than a chair coming through!

After that interaction, I wondered how often people characterize others simply by their disability. While it is obvious that I use a wheelchair, it doesn’t define who I am. I’m able to accomplish many goals. If anyone doubts their ability to succeed, focus on the skills that you have and not what others think of you.

Even if the person has the necessary skills, the working environment can be a daunting places for those with disabilities. Clear and constant communication with your supervisor is key to making sure that you can complete the job properly. Your employer can provide reasonable accommodations, such as ergonomic chairs and desks, assistive technology and other resources.

A greater focus toward disability employment is increasing  job opportunities. The Federal government has a goal that 2 percent of its workforce will be people with disabilities. The Department of Labor recently announced the theme for National Disability Employment Awareness Month: “My Disability Is One Part of Who I Am.”

The observance is held every October. “This year’s theme encapsulates the important message that people with disabilities are just that — people,” said Jennifer Sheehy, acting assistant secretary of labor for disability employment policy. “And like all people, we are the sum of many parts, including our work experiences. Disability is an important perspective we bring to the table, but, of course, it’s not the only one.”

Each person is a valuable member of the team, regardless of ability. Don’t be afraid to advocate for yourself; that’s the best way to live an empowering and successful life!

Disability Employment Survey

A Colorado State University graduate student is surveying how people with disabilities perceive themselves in the workforce. If you’re interested in completing the survey, go to http://colostatepsych.co1.qualtrics.com/jfe/form/SV_7Un8V3R0Na5KLE9.

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