Deaf Employee Is Heard
By Rich McManus
From NIH Record, Vol. LXV, No. 14, July 5, 2013
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.”
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.”