My reaction to this is strong and difficult to describe. Growing up with a disability, I often felt isolated. I felt disrespected by my peers, unsure of my future, and experienced intermittent but profound depression. Multiple surgeries, physical betrayals, and rejections can make you want to give up. Even today, I alternate between the extreme fear of an itch I can’t scratch or food I can’t swallow, and the incredible joy I feel when I can clear my throat unaided or zoom through a crowded street in my motorized wheelchair. As disabled people, we are endlessly at the mercy of circumstances beyond our control.
I do not wish to criticize Jerrica Bolen. I do not know everything about her situation. But I hope she finds the will to live. Like many other SMA patients and disability rights groups, it saddens me to think that others may become exhausted and anxious and follow her example. I wish she had received the same level of intervention as other suicidal 14-year-olds. I wish I could have told her about the psychological alchemy that can transform frustration into inner motivation. I wish I had had the chance to tell her that society needs people with disabilities too.
I believe the perseverance to live a fulfilling life despite a severe disability comes from honestly facing one’s own powerlessness and weakness, recognizing how bad things have been and how much worse they could get. This allows one to fill the present with joy. By living with a disability, one has already overcome many of the things that others fear most. And once you have overcome them, of course, you will survive. The necessary determination and reluctant acceptance of the things that cannot be changed may bring a certain wisdom.
I know that external circumstances make a big difference. My family has been my relentless supporter. My parents fought to get me into mainstream schools long before it was mandatory and insisted that I could be anything I wanted when I grew up. Today, my family’s financial support allows me to employ a full-time caregiver that I need to lead a productive life. My wife covers my personal living expenses whenever paid staff is not available. Without all this, I would not be here, but I think I found a way to survive.
Laurie Hoyrup lived a full and active life. I wish I could convince Jerrica Bolen and others like her to continue to strive to do the same, to stop pinning their hopes and dreams on the idea of a heaven of unfettered athleticism. I wish I could convince her that it would be better to be dead than disabled.