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Monday, July 25, 2016

Jerika Bolen and Inspirational Death

I have remained silent about a story that has gone viral. I am referring to--Jerika Bolen who is being hailed as a hero for deciding to die. Bolen has Spinal Muscular Atrophy type 2, a condition that is universally described by the mainstream media as terminal. Many people with her condition, adults mind you, have been commenting on Facebook and a myriad of other social media outlets. Unlike the press, people with a disability, especially those with SMA type 2, are upset. More than upset really. The word outraged is more apt. I share this sentiment. On Facebook Lawrence Carter Long a well regarded and well-known disability rights advocate, wrote about how the media had portrayed Bolen’s desire to die:

Vomit inducing. Ulcer creating. When the fetishization of death and disability shines a glittery veneer on the scary underbelly of inspiration porn suicide becomes a spectacle and the best response we can come up with is to roll over and fan the collective fantasy of "individual choice" by throwing a f'n party. Angry, enraged but mostly heartbroken.

Judge for yourself. USA Today, Washington Post, Huffington Post and others have all published tear jerking stories about Bolen. This link is typical of how the story has been handled. Mainstream media outlets are universal in praising Bolen. She is described as wise beyond her years. She is lauded as brave and her decision to end her life, though tragic, is completely and utterly understandable. A river of tears is flowing and the voice of people with a disability absent. Bolen’s pain is so severe she, her mother and health care professionals all agree hospice care is the best treatment option. When I read this emotional and misleading reporting I shake my head in wonder. Inspiration porn is now being matched by inspirational death. Inspirational death typically involves a person with a disability expressing a strong desire to die. These people are inspiring.  Inspiring to people without a disability. What is consistently missing from such news stories? Voices of dissent. We cripples need not express an opinion. Our voices if heard are quickly dismissed. Bolen is different. She is brave. We are angry. No one wants to know what we think.  

Bowen is on the media fast track to death. The skids are greased replete with her final dance. Bolen is going to die. This narrative sells newspapers. Televison rating go up. The narrative is classic click bait. Newspapers, television and every sort of online news outlet is all over this story. The mainstream news is in a feeding frenzy with full media saturation. Bolen will die to critical acclaim. Until a few days ago I felt I had nothing to say because others like Emily Wolinsky  and Alice Wong have been so eloquent and articulate. Recently I read comments by Lydia Nunez who did a masterful job summarizing six points with regard to Bolen and the larger implications of such inspirational death narratives. With a nod to Nunez, here are six important points you will not read about in the mainstream press.

1.    If a typical teen wanted to die psychiatric care would be provided immediately. No person would encourage a typical teen to die.  The very idea would be deeply objectionable. All objections and any effort to seek psychiatric care go out the window when a disabled teen expresses the desire to die. No effort is made too look beyond a medical model of disability. No effort is made to seek out adults who had the same condition as a teen. Any criticism on the part of people with a disability is perceived to be in poor taste. Reaction to those people with a disability that point out life with a condition like Bolen’s remains sweet and worth living is met with hostility.
2.    Statistics demonstrate gross inequities exist when black people and people with a disability try to access health care. Health care professionals routinely ignore or minimize pain relief. Psychiatric care consults are absent or minimally provided. Blacks and people with a disability are routinely given inadequate pain relief. The majority of pain specialists contend that pain can always be effectively managed.  A pain consult in Bolen’s case seems more appropriate than hospice care.
3.    Bolen has a gofundme account. She has received overwhelming support from all over the world. Good for her. She has raised more than $33,000 in a very short period of time. However, when people with a disability try and crowd source funding to pay for life empowering adaptive equipment the return is meager at best. This leads me and many who live with a disability to question why is it easier to die than live with a disability. 
4.    Bolen is a classic case of inspiration death. Typical others are inspired when a disabled person wants to die. This thought process reinforces the widely held belief that death is preferable to life with a disability. In fact about the only time people with a disability get support of typical others is when they express a desire to die. Express a desire to live and people suddenly are very interested in the cost of care and openly question should such resources be spent on the life of a person with a disability. The implications are not subtle—our lives are less valuable.
5.    Being 14 is not easy. Ableism, racism, and mental health issues are rampant. For a teenager like Bolen to learn how to adapt to life with a disability and her place in the world is exceedingly difficult. Depression is a reasonable and treatable response.   
6.     People with a disability are subjected to routine discrimination in large and small ways. Ableism abounds. Social inequities are profound. Unemployment is the norm for people with a disability.  Most people with a disability live on the edge of poverty.  When one combines the five points above with the gritty reality of what it is like to live with a disability it is understandable why a teen could believe death is preferable to life with a disability.

The Bolen story makes no sense when one digs beneath the many assumptions made about life with a  disability. Foremost among my questions are why has the family eagerly embraced the news? If my child were terminally ill and in pain so severe the press would be last people on earth I would want to deal with. What about all the money that has been raised to date? The family has raised over $33,000 supposedly for the final dance. News reports state everything associated with the last dance have been donated to the family. I cannot imagine spending over $30,000 on a party. Perhaps the family needs money to pay for medical costs. I have no idea if this is the case. What I do know is that no one is asking the hard questions that need to be asked. Is Bolen’s condition terminal? If terminal, why have physicians been unable to relieve her pain? Is a 14 year old capable of making an informed decision about her life? Why does Bolen think her life as a wheelchair user is not worth living? Various news outlets report that Bolen has had over 30 surgeries. This seems unlikely given the fact she is just 14. Did she average over two surgeries a year since birth? In place of these questions Bolen had over 1,000 people from all over the nation attend her final dance.  Why did all these people support her effort to die. Where are the people who would like Bolen to eek out every last second of life? Where are the people with a disability who have endured what Bolen has and lived to become adults content with life? These people exist. We are among you. All you need to do is listen. 


Matthew Smith said...

There's something odd about this story. They are saying she will have her ventilator switched off in order to die, but look at any of her pictures and there's no sign of a ventilator. She doesn't have a tracheostomy which all modern ventilators rely on (a few polio survivors have an external shell based on the same principles as an iron lung, but they're rare). SMA doesn't usually result in ventilator dependency at this age; some people with it have them because they cannot breathe *adequately*, but this is not the same as being unable to breathe at all. So how is she going to achieve her aim? Or do they just mean she will refuse further intervention to keep her alive, and access palliative care? At best this story is misleading and at worst it's all a big hoax.

Unknown said...

Since she's in hospice, she's refusing any further intervention to keep her alive. She's just being kept comfortable until she dies naturally. The ventilator story is very misleading. She's referring to a BiPap or C-Pap machine people use at night to help them breathe normally. Many people who have sleep apnea use the same machines. That's not a vent keeping them alive. This is purely attention seeking behavior, in my opinion. I have SMA-2 and this story makes me angry and sick of the way she's portraying herself and her life. She's contradicting herself over and over. I have sympathy for her chronic pain. But the rest is bullshit!

william Peace said...

Matthew, Much of the coverage of the story makes no sense to me. She is continually described as ventilator dependent. As you point out, there is no visible trach. I assume she uses a bipap machine which I would not deem a ventilator. She has stated she has had over 30 surgeries. That is an average of two surgeries per year since birth. That too makes no sense. No person with SMA type 2 is interviewed in any mainstream news outlets. The stated goal of the go fund me account was tot pay for a huge final dance. The charge for her final dance was waived by a myriad of businesses. Where is that $33,000 going? I doubt its a hoax but nothing makes sense to me.

K said...

I can't even describe how pleased I was to find your post. This story has bothered me from the first moment I heard it. I, too, have SMA Type II. I walked until age 7, and have used a power chair since age 12. I am now 49 years old, and have a 20 year old daughter. My life has not be unlike most other people's lives, with the exception of the fact that I live it on 4 wheels. I have had a few surgeries in my life, but only one, a spinal fusion, was related to my condition; the others were routine and common to everyone. I count myself lucky that I only experience minor aches and pains, and don't suffer excruciating pain - but frankly, I've never even heard of that with SMA. As I have said to other people, I understand that disabilities cannot be compared, but I hate the way this story makes the public view people with disabilities. And I, too, wish that the mainstream media would fact check this story more thoroughly. Because the people who are really brave are the ones that go on surviving, every single day, in the face of all kinds of barriers. Mental. Physical. Emotional. Financial.

Unknown said...

Love your article. I am from this girls little town. I am also a part time vent user for over 30 years. I still live a full life. I would of loved to chat with her and her family, but they seemed very closed minded. Sounds like they got a lot of false information. This tends to happen with the medical system. I have chronic pain and at one point wanted to cut off my legs. After going from doctor to doctor and getting all sorts of off the wall recommendations. Mostly for spine surgery, I was able to find the right medication and dosage. This story is very sad.