It has been 18 months since the Special Olympics movement first heard the name Amelia Rivera – the brave 3-year-old girl and her amazing family denied a kidney transplant because of her intellectual disability. In her blog post “Brick Walls” published in January 2012, Amelia’s mother, Chrissy, recounts that agonizing encounter with a doctor and social worker when she was told that she should let her child die, despite having family members who were willing donors.
“The doctor begins to talk…and places two sheets of paper on the table. I can’t take my eyes off the paper,” she wrote. “Paper number one has the words, ‘Mentally Retarded’ in cotton candy pink.”
Chrissy was naturally outraged beyond words. The verdict seemed clear enough: Amelia was going to lose her life and lose it soon. No transplant; no life. But Chrissy and her husband Joe weren’t defeated; they were instead determined—determined to prove anyone who doubted their daughter’s value wrong. Dead wrong.
Amelia’s story made all of us incensed. At the time, I shared her story with the Special Olympics movement with the hopes that it would inspire action: “There can be no bystanders at moments like this,” I implored. “Amelia is everyone’s child. If she is denied care, we are all denied our humanity.”
The brick wall that the Riveras faced was, alas, all too familiar to the athletes and families of Special Olympics. The Riveras’ experience was one among millions faced by people with intellectual disabilities and their families every day—albeit an extreme one. Whether it is in the institutions of health care, the halls of education, the meeting rooms of government, the fields of sport, or the whole range of social environments, people with intellectual disabilities are routinely stopped short by the walls of intolerance and ignorance. The Riveras understood the stakes. And they were not going to let those walls cost Amelia her life.
Happily, we live in an empowered time when citizens and people of goodwill can actually challenge the way things are and not accept the status quo as if it were fruitless to oppose. There used to be an expression: “You can’t fight city hall.” Not anymore.
We in Special Olympics aspire to unity and think of our work as being engaged in a dignity revolution. We wage this revolution not by fighting but by awakening; not with weapons but with games; not with arguments but with relationships. I am continually amazed by the leaders around the world who lead this revolution, and never have I been more amazed than I was by following Chrissy and Joe and Amelia in their campaign for life. They not only challenged all of us to join them and work harder for justice but they did so with compassion by reminding us of the fragility and unconditional value and sacred importance of each child—and of all of us.
Chrissy, Joe and Amelia won. (Read Chrissy’s most recent blog.) The mighty brick walls have come down. Chrissy gave Amelia one of her kidneys. Joe supported them both together with a band of family and friends. The doctors and medical professionals at the Children’s Hospital of Philadelphia performed their near miraculous operation. Amelia is home and hopeful. The adventure of life can now continue with all the energy of childhood and good cheer and love.
Together, they didn’t just fight “city hall.” They leveled it. And by doing so, they leveled the world, even if just for a moment. And with the walls down, it’s as though all of our views can expand, our horizons grow more beautiful, the unity of us all become more visible. The hope of justice is just a little closer today and its symbol is Amelia Rivera.
Thanks, Amelia. We can’t wait for you to feel strong enough to come out into the world so we can cheer you as the newest leader of the dignity revolution!