Like Steve Gleason, use your voice for change | Editorial
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Former Saints star Steve Gleason lost his ability to speak two years after he was diagnosed with Amyotrophic Lateral Sclerosis. But he had spent months recording nearly 5,000 sentences, and technology has given him a voice.
Gleason is able to pay the $14,000 for a speech-generating device, but many others are not. So, as he has so many times since his diagnosis in 2011, he fought for patients who don't have his resources.
Early Friday morning (Feb. 9) Congress approved the Steve Gleason Enduring Voices Act. It makes coverage by Medicare and Medicaid of speech-generating technology a permanent benefit.
This is a tremendous victory for Team Gleason and for people with ALS and similar diseases that rob people of the ability to communicate.
"When a person is diagnosed with ALS ... he is expected to fade away quietly and die. This is not okay. The average life expectancy is two to five years after diagnosis. Along with thousands of others, I am determined to not fade away quietly," Gleason said in a 2014 opinion column in The New York Times. "With a sense of purpose, the right support and the right technology, it is possible to live a meaningful life despite ALS."
His advocacy persuaded Congress in 2015 to temporarily order Medicare and Medicaid to pay for the technology. But the vote Friday removes the uncertainty and makes the coverage ongoing.
The dispute that led to a breakdown in Congress Thursday night over the budget put the Gleason act temporarily in peril. Gleason, using technology that allows him to type with his eyes, tweeted a plea Wednesday for compassion to overrule politics.
"Our issue is simple. People who lost the ability to physically communicate, need this legislation to protect access to technology that allows them to connect with the world around them," he said in a statement attached to the tweet. "This is not an entitlement bill, it is an empowerment bill, for people who want to be productive citizens," he said.
He also noted that the legislation passed unanimously in 2015, reflecting strong bipartisan support. In a tweet Friday, Gleason thanked Louisiana Republicans Sen. Bill Cassidy and House Majority Whip Steve Scalise and Democrat Cedric Richmond, among others, for their leadership.
Team Gleason has committed its own resources to patients in need, too. The foundation provided more than $1 million in 2016 in technology to give people with ALS the ability to communicate.
"Communication is one of the most powerful tools humans possess, and is often taken for granted," Gleason said in April 2015 when the act named for him originally passed the Senate. "However, when you lose the ability to move and speak, communication becomes not only empowering, but also life sustaining."
Gleason's approach to his disease is inspiring. He recognized that he could use his fame as a former Saints special teams ace to help other patients and advocate for policy changes. He expressed his inspiration in a speech at a fund-raiser for Son of a Saint in 2013, after he had lost his ability to speak. "Without tragedy, we cannot be heroes," he said. And "the greater the tragedy, the greater the opportunity."
His work is reminiscent of Superman star Christopher Reeve, who fought for increased research into reversing paralysis after his 1995 spinal cord injury. Reeve worked with Congress in 1999 to pass the Work Incentives Improvement Act, which allowed people with disabilities to return to work and still receive benefits.
He also directed a television movie in New Orleans the summer before he died in October 2004. Lara Grice, who played a teacher in the film, told The New York Times then that action on the set would stop when Reeve was giving direction through his audio hookup from a production booth.
"People would stay still and listen and pay attention to what he was saying, even if it didn't pertain to them," she said. "They held their work so he was able to finish his sentences."
That is the power of words, for all of us, not just a director or an NFL star. Steve Gleason has ensured that thousands of people whose bodies are working against them will still have a voice. He even brought Congress together, at least for a moment. And he has shown how we can all use our voices to bring about change.
Gleason is able to pay the $14,000 for a speech-generating device, but many others are not. So, as he has so many times since his diagnosis in 2011, he fought for patients who don't have his resources.
Early Friday morning (Feb. 9) Congress approved the Steve Gleason Enduring Voices Act. It makes coverage by Medicare and Medicaid of speech-generating technology a permanent benefit.
This is a tremendous victory for Team Gleason and for people with ALS and similar diseases that rob people of the ability to communicate.
"When a person is diagnosed with ALS ... he is expected to fade away quietly and die. This is not okay. The average life expectancy is two to five years after diagnosis. Along with thousands of others, I am determined to not fade away quietly," Gleason said in a 2014 opinion column in The New York Times. "With a sense of purpose, the right support and the right technology, it is possible to live a meaningful life despite ALS."
His advocacy persuaded Congress in 2015 to temporarily order Medicare and Medicaid to pay for the technology. But the vote Friday removes the uncertainty and makes the coverage ongoing.
"Our issue is simple. People who lost the ability to physically communicate, need this legislation to protect access to technology that allows them to connect with the world around them," he said in a statement attached to the tweet. "This is not an entitlement bill, it is an empowerment bill, for people who want to be productive citizens," he said.
He also noted that the legislation passed unanimously in 2015, reflecting strong bipartisan support. In a tweet Friday, Gleason thanked Louisiana Republicans Sen. Bill Cassidy and House Majority Whip Steve Scalise and Democrat Cedric Richmond, among others, for their leadership.
Team Gleason has committed its own resources to patients in need, too. The foundation provided more than $1 million in 2016 in technology to give people with ALS the ability to communicate.
"Communication is one of the most powerful tools humans possess, and is often taken for granted," Gleason said in April 2015 when the act named for him originally passed the Senate. "However, when you lose the ability to move and speak, communication becomes not only empowering, but also life sustaining."
His work is reminiscent of Superman star Christopher Reeve, who fought for increased research into reversing paralysis after his 1995 spinal cord injury. Reeve worked with Congress in 1999 to pass the Work Incentives Improvement Act, which allowed people with disabilities to return to work and still receive benefits.
He also directed a television movie in New Orleans the summer before he died in October 2004. Lara Grice, who played a teacher in the film, told The New York Times then that action on the set would stop when Reeve was giving direction through his audio hookup from a production booth.
"People would stay still and listen and pay attention to what he was saying, even if it didn't pertain to them," she said. "They held their work so he was able to finish his sentences."
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