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.http://www.usatoday.com/story/news/nation-now/2016/07/23/more-than-1000-prom-wisconsin-teen-choosing-die/87474626/ 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.
5 comments:
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.
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!
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.
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.
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.
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