One Voice Can Make a Difference

http://nihrecord.od.nih.gov/newsletters/2013/07_05_2013/story4.htm

Deaf Employee Is Heard NIH Mission Statement Is Amended By Rich McManus

At the suggestion of a National Eye Institute employee who is deaf, NIH recently amended its official mission statement.

The one-sentence statement had said, “NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life and reduce the burdens of illness and disability.”

But because David Rice, a management analyst at NEI since October 2009, felt that his particular disability was not a burden, he wanted to know if NIH director Dr. Francis Collins would be willing to modify the mission statement so as not to offend people who do not consider their disabilities to be burdensome.

Recently, the phrase “the burdens of” was removed from the statement, which now reads, “NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life and reduce illness and disability.”

According to Debra Chew, director of the Office of Equal Opportunity and Diversity Management, this was a lesson in NIH compassion and responsiveness.

“This was a very important event from a diversity perspective,” said Chew, who arrived at NIH last July. “It shows that an individual employee can raise concerns that Dr. Collins will take seriously and address. I think that’s good. NIH has no wish to have a mission statement that offends people…It just goes to show you that we all have different perspectives.”

NEI’s David Rice objected to NIH’s mission statement and took his concerns to NIH leadership, who ended up agreeing with him.

Chew met Rice last fall at a “meet and greet” and mentioned that he had a problem with the mission statement. As she recalls, “He told me, ‘We don’t consider ourselves to be burdens, nor do we consider our disability a burden…Would you ask Dr. Collins to consider a change?’”

Chew broached the issue with Collins, “who was immediately agreeable to a change,” she said. “No one had really looked at [the statement] this way. David really raised a good point.”

Chew took the suggestion to Kim Kirkpatrick, OEODM’s disability program manager, who also chairs NIH’s disability committee. “Once we realized that Dr. Collins was open to a change, we got input from the disability committee on proposed language,” said Chew. Two versions were proposed and the three-word change was adopted.

“This is a symbolic moment for NIH,” said Chew. “It’s really about [Rice’s] courage. He did a great thing for the NIH.”

Rice, who became deaf at age 4, recalls the “grace and integrity” with which his parents dealt with his removal from the school system once he became deaf; they found a school better equipped to handle his needs. “It was the fire that my parents had that led me to want to become an advocate not only for the deaf community but also for all those who have a disability,” he said.

“I know it was not the intent that NIH had [to offend people with disabilities],” Rice continued, “but it could look to some as though, in trying to improve the health and life of American citizens, NIH is only looking for cures to reduce disability because [people with disabilities] are a burden on society. The new mission statement takes out that stigma that we are a burden and conveys the message that NIH’s goal is to reduce illness and disability because it can improve the livelihood of American citizens and not because we are a burden on society.”

Rice said he didn’t think his suggestion had much chance of being taken seriously at first. “To be honest, I did not expect much,” he said. “All I wanted was for them to listen, which they did. Debra told me that she spoke to [NIH principal deputy director] Dr. [Lawrence] Tabak, who wholeheartedly agreed. At that point, once I knew Dr. Tabak was in the picture, I knew that something was going to come of this.

“Let me tell you,” Rice continued, “there was no greater feeling than when Dr. Collins used the new mission statement on Capitol Hill. I take no credit for the new mission statement. All I did was raise questions and concerns. But I felt that my small change made a difference, and that alone is my lifelong goal—making small changes to create big impacts.”

He concluded, “I can only imagine that the change will be a positive one. The biggest reason why NIH was so appealing to me was its ability to be open to change as well as moving forward, a lot quicker than some government agencies do. That is a product of the vision that Dr. Collins has for NIH. But like anyone who has a large responsibility, it is hard to envision everything—that’s where everyone else comes into play. [We can all] make NIH [a] leader in science as well as a great work environment where everyone can feel they are making a small but important impact on the American public.”

Syracuse community builder Brenda Muhammad on the power of storytelling

http://blog.syracuse.com/cny/2013/07/syracuse_community_builder_brenda_muhammad_on_the_power_of_sharing_ones_story.html

Brenda Muhammad of Syracuse is a volunteer and community builder who believes in the power of sharing one's personal story to help others. Dennis Nett | dnett@syracuse.com

By Jennifer L. Owens | Guest columnist 
on July 05, 2013 at 7:56 AM, updated July 06, 2013 at 8:41 AM

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"Some people are born knowing their purpose," said Brenda Muhammad. "Other people, like me, have no clue why they are here. But if I just keep moving I hope that one day I'll figure it out."

Muhammad is always moving. There is no other way to end up with the sizable list of volunteer activities and educational pursuits that she is juggling at any one time. This juggling is what earned her the 2013 Unsung Heroes Award during Syracuse University's annual Martin Luther King, Jr. Celebration earlier this year.

How Muhammad has remained 'unsung' for this long is a mystery. She has twice served as an AmeriCorps VISTA volunteer coordinating Women Build at Syracuse Habitat for Humanity, is a key player in the nonprofit FORCE (Focusing Our Resources for Community Enlightenment), and participates in the Black Syracuse Project to capture community stories.

She describes her life as a journey to discover her true purpose. Along her path, she has channeled her interests and community engagement activities to become a connection-maker. She sees value in sharing the things that she learns with her community.

This makes her well-suited for her role in FORCE, a nonprofit that combats neighborhood deterioration by inspiring residents to pool their resources to improve their condition. She sees opportunity to further the work of FORCE by sharing the oral history collection techniques she learned through the Black Syracuse Project training. 

Muhammad believes that sharing our stories with each other strengthens connections and promotes healing.

"We need to know about hard times, and we need to know about success stories," said Muhammad. "When you tell that story others can relate to you. They learn that there is hope."

Muhammad believes that there is a desire to be known and acknowledged that is hard-wired within us. She is drawn to oral history and storytelling as a way to give others the opportunity to satisfy this basic need.

"Sometimes telling your story is part of a healing process," she said. "Somebody has to hear me. What if no one knew you were alive?"

Telling the story is good for the storyteller, but it is also a tool for improving the lives of those who hear your story. "People can relate to your story," said Muhammad. "Sometimes you think that you are alone in something, but then you find out about connections."

The more connections that Muhammad and others facilitate through the Black Syracuse Project's initiatives, the more opportunity there will be for community members to identify opportunities to work together toward neighborhood improvement.

Muhammad is not one to remain still. She keeps moving, always looking for the next opportunity to expand her skills and serve her community. She is currently pursuing a Certificate of Advanced Study in Cultural Heritage Preservation at the Syracuse University School of Information Studies, as well as studies at SUNY Empire State College. She hopes to intern for the Black Syracuse Project in the near future to continue making the connections that she believes make a difference.

Despite her energy and palpable enthusiasm, even she sometimes wonders about the limits of any one person.

"I had a motto, and I haven't said it in a long time," Muhammad says wistfully. "I don't know if that's because I stopped believing it or I'm just too tired to think it. I used to always say, 'I shall not be conquered.' I thought I could do anything. But right about now I'm a little close to that conquered."

Despite these moments of doubt, she is propelled forward by the support of her friends and family. They know that she can make a difference and encourage her to explore new paths in her quest to find her life's purpose.

"My friends are amazing. They don't discourage me from trying anything," said Muhammad. "Sometimes I wish they would!"

In the end, Muhammad believes each of us has something we are meant to give to others. It can be both a burden and our life's greatest joy to figure out what that is; to tirelessly make connections, to tell our stories past and present, and to keep on moving.

To learn more about the Black Syracuse Project and listen to oral history recordings captured by through the project, visit www.blacksyracuse.org