Jerika Bolen's death was not beautiful. It was a tragedy.
No 14-year-old should be allowed to make a decision about life and death. NO TEENAGER, no matter what. It's ridiculous.
It highlights how people in our society view people with disabilities: people with lives not worth living, people to be pitied. If she had been an able-bodied person in the same amount of pain, would people have encouraged her to die in the same way? I don't think so. It's sickening.
People who use wheelchairs, require surgeries that cause pain, and use assistive technology to breathe still MATTER. They can make a difference in the world. They need to be encouraged no matter what. But our society seems to have no problem telling young people the opposite: just look at the movie Me Before You. "You're disabled, so the best thing you can do for yourself and others is to choose death."
Partner that narrative with normal teenage angst and it's no wonder Jerika thought pain was enough reason to die. I don't judge her at all for thinking that. She should bear no blame at all in this. I judge the people who looked at this beautiful 14-year-old with all of the potential in the world and reinforced her death wishing with "support." They literally threw her a party (her "dying wish" prom) to encourage her decision. How is that okay?
If people had treated me like that when I was her age, I might be dead, too. If people had provided me with a guilt-free, celebratory way to die when I was her age, my depressed teenage brain might have taken it.
Personal feelings and circumstances aside, the media coverage of this story has been shocking.
From the Washington Post:
"Type 2 spinal muscular atrophy (SMA II) is a rare disease that causes debilitating pain" -- Inaccurate. SMA itself does not cause pain; treatable, manageable complications do. The disease itself, which is currently incurable, only causes muscle weakness, which is hardly "debilitating pain."
"People with SMA II, an inherited, incurable condition, don’t usually live into adolescence" -- Again, wrong. Most people with SMA type 2 (which is what I have) live into adulthood, and their life expectancy increases all the time with improvements in medical technology.
This ignorant reporting which is usually coated in a tone of authoritative approval only adds to the problem.
Jerika could have lived into adulthood. She could have gained clarity and maturity and saw reasons to live like I did. But her life was tragically cut short, and I am impacted and disturbed by her loss.
Rest in peace, Jerika Bolen.