Policy shouldn’t limit those with disabilities

On April 29, 2007, my life was changed irrevocably. It was on this day that my husband Brian and I brought a beautiful baby boy into the world. Today, we are the proud parents of Cole Rodgers, whose influence on our lives has been immeasurable. Like any 5-year-old, his heart is full of love. He’s active. He’s inquisitive. He’s at the top of his math class. He dances to Bruce Springsteen, watches Navy games with his dad and loves to play on the iPad. Cole has an infectious laugh and the unique ability to attract an audience with effortless charm. 

That day in April was the greatest of our lives — the one I had dreamed of for so long. It was also the day we found out our son had been born with Down syndrome. 

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It wasn’t easy to hear the news. It’s not what we had hoped. It’s not what we had expected. And it’s certainly not what we had dreamed. Within hours of giving birth, Cole was forced to undergo surgery for a duodenal atresia, and within less than three days, a simple blood test confirmed what the doctors had suspected already: Cole was born with an extra twenty-first chromosome. The doctors sat Brian and me down and told us — with unequivocal certainty — that Cole’s life would be filled with doctor’s visits, medical checkups and endless challenges. And just like that, our lives changed forever. In the best way imaginable. 

Cole has made me a better person and a better legislator. He has taught me to focus on what children with disabilities can do, not on what they can’t. Since I gave birth to Cole, I have been warmly welcomed into the disabilities advocacy community — an ever-growing family eager to open the doors to those with special needs. In fact, just days after Cole was born, I received a call from Eunice Kennedy Shriver, who became a mentor to me and whose work with the Special Olympics has since changed my life. 

Because of Cole, I meet and work with so many individuals and organizations across the country that strive to make the lives of those with disabilities better: the National Down Syndrome Society, the National Down Syndrome Congress, Global Down Syndrome, Autism Speaks, Keep Infants with Down Syndrome (KIDS), the Evergreen Club and so many more. I work with the American Association of People with Disabilities (AAPD) to offer students with physical and intellectual disabilities internships in my office. I have become part of an extensive network of people who focus on the gifts — not the limitations — that those with disabilities bring to this world.

Cole has inspired me to fight every day for children with disabilities. He has shaped my purpose in life and my perspective in Congress. Most importantly, he has taught me to put people above politics — no matter the issue. Shortly after he was born, I founded the bipartisan Congressional Down Syndrome Caucus, the first-ever congressional caucus to provide educational resources and support legislative activities improving Down syndrome research. Now, with more than 80 members, we have hosted briefings and supported initiatives promoting those with Down syndrome and other disabilities. We’ve introduced multiple pieces of legislation, including two Trisomy 21 bills aimed to enhance and improve Down syndrome research. We’ve made headway. A lot of it. 

In fact, in this Congress alone, I’ve worked with my colleagues across the aisle to introduce the Achieve a Better Life Expectancy (ABLE) Act, which would empower individuals with disabilities by reforming the tax code and enabling them to have access to their benefits. When Cole was born, we were advised not to put any assets in his name because it would penalize him if he needed to qualify for a government program someday. Millions of others parents face the same impediment: they want to expand their children’s options without jeopardizing their access to benefits. We must get rid of federal policies that limit those with disabilities and make them dependent on the government. We need the ABLE Act so that children with special needs can have the opportunity for better and brighter futures. 

We’ve come a long way since the days of Dr. John Langdon Down, the compassionate and astute 19th-century British physician after whom Down syndrome was named. But the fight is not over. While those with special needs have far greater opportunities today than they did decades ago, we still have a long way to go. I want to ensure that children with disabilities have the opportunity to learn, grow and thrive — to be educated, get jobs and find housing. But more than anything, I want them to have the opportunity to change lives the way Cole has so beautifully and unknowingly changed mine.

McMorris Rodgers is vice chairwoman of the House Republican Conference and co-chairwoman of the Congressional Down Syndrome Caucus.