When Claire Wineland was just a baby, her parents learned she had a genetic disease called cystic fibrosis. At the time, her life expectancy was only 10 years, but Wineland recently passed away at the age of 21 — more than twice as old as doctors predicted. During the “remainder” of her life, she founded the Claire’s Place Foundation to teach the world that just because you have a disease doesn’t mean life can’t be wonderful.
“I’ve spent a quarter of my life in the hospital, I’ve had about 35 surgeries, I’ve lived a very unusual life,” she said in an interview with PopSugar Mums. “But I’ve still really enjoyed life.”
Wineland woke up from a coma after nearly dying at age 13 and decided it was her life’s purpose to educate others on how they could “live a life they can be proud of, even when they’re sick,” she said. When people get sick, most of the time, she said, they stop living until they get better. They think about how they’re going to get there, but there’s no such thing, she said.
“There’s a lot more to life than being healthy,” she explained. “There’s a lot more to life than being normal.”
Growing up, she didn’t have any role models who were sick like her, so she became one herself. She traveled, became a speaker, went out on dates, ran a nonprofit. She transformed her drab hospital room into her own space, with pretty pillows and twinkle lights. And none of this was achieved in spite of her illness, but because of it. Being sick enabled her to do amazing things, like sneaking out of the hospital to meet her favorite politician, Bernie Sanders.
People with illnesses and disabilities don’t spend their whole lives thinking about death. They think about all the things the world thinks and worries about. Wineland said death is not what worries her the most. A life with health problems is not something to be feared, Wineland taught us. It is a life with the same opportunities as everyone else for great, amazing, and ordinary things to happen. Furthermore, Wineland said, “Those who suffer the most in life are actually the ones who have the most to give.”
Wineland is not the only voice for those who believe other people’s lives are not worth living. Frank Stevens, an actor and Special Olympics athlete with Down Syndrome, recently testified before Congress about Down Syndrome research and abortion rates, saying, “I’m a man with Down Syndrome, and my life is worth living.”
Stevens has lectured at universities and appeared in award-winning films and Emmy Award-winning television shows. He calls people with Down syndrome a “medical gift to society” and a “blueprint for medical research” for diseases such as cancer and Alzheimer’s. He says most people have prejudiced and outdated ideas about what life with Down syndrome is like, and he wants society to focus on researching Down syndrome and not on aborting fetuses with Down syndrome.
“Seriously, I have a great life!” he said.
In 2016, Ben Matlin wrote an opinion piece for The New York Times about the sudden death of a woman with the same condition as him, spinal muscular dystrophy. Matlin wrote about Laurie Whirup’s lifelong fight for disability rights and her role as executive vice president of the State Council on Developmental Disabilities. Both Matlin and Whirup believed in equal and fair treatment for people with disabilities, and equal and just access to jobs, dating, housing, and more.
“I decided a long time ago that if I wanted to love myself, I had to love the obstacles that made me who I am,” he wrote with the help of a voice-recognition computer.
Shortly after Hoylap’s death, Matlin learned of the death of Jerrica Bolen, a 14-year-old girl with SMA who died after refusing life-prolonging treatment. Reports say that as she chose to end her life, she was comforted by being told that in heaven she would be able to move freely and without pain. She had essentially been taught that she was oppressed in this world – that she deserved to be able to move, run and live without pain – as if living with a disability made her less than, not equal.
“My reaction to this was strong and difficult to describe,” Matlin said. “Growing up with a disability, I often felt isolated. I felt disrespected by my peers, unsure of my future, and experienced intermittent but severe depression. Repeated surgeries, physical betrayals and rejection can make one want to give up.” […] I have no intention of criticizing Jerrica Bolen. […] But I hope she finds the will to live. Like so many other people with SMA and disability rights advocates, I am saddened to think that others may become so exhausted and anxious that they may follow her example.”
He wonders whether Boren received the same intervention that other suicidal 14-year-olds receive, or the same psychological help that a “typical” teenager who wants to die would receive. “If I had the chance, I would have told her that society needs people with disabilities, too,” he said.
Matlin lives a fulfilling life with his wife and children and wishes Bolen had the opportunity to do the same, instead of “pinning his hopes and dreams on the idea of a haven of unfettered athleticism.”
“I wish I could have convinced her that death would be better than being disabled,” he said.
