Why Have We Become So Quick to Let Our Disabled Die?

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In the aftermath of previous physician-assisted suicides, cases like Jerika Bolen’s are dividing disability advocates and proponents of assisted suicide.

By s.e. smith


(Photo: Anjan Chatterjee/Flickr)

At the end of August, a 14-year-old girl intends to commit suicide. The media is full of the news, and it’s calling her brave and inspiring for being outspoken about her decision. Typically, suicidal ideation in teenagers is not celebrated: It’s viewed as a horrific problem that indicates the need for medical intervention. The difference in this case is that Jerika Bolen has Spinal Muscular Atrophy, a congenital disability.

Her case comes at a moment when debate over physician-assisted suicide is at a fever pitch, with prominent stories routinely making headlines, like that of Brittany Maynard in 2014, and five-year-old Julianna Snow, who died in June after refusing treatment for complications related to her disability, and Robert Stone, who will be one of the first to take advantage of the assisted suicide law pushed by Maynard and her family. In the aftermath of previous physician-assisted suicides, cases like Bolen’s are dividing disability advocates and assisted-suicide proponents.

The reality of situations like these is extremely complex, and it’s simplistic to say that this is just about the right to die, and that there are only two sides to the question on physician-assisted suicide. There are a myriad of contributing factors: Disablism, and the notion that life with a disability is not a life worth living; racism, and the judgments made about a black child and her family; the history of using disabled children as pawns and objects of debate.

Is Jerika Bolen terminally ill, or is she disabled?

As reported in the news, Bolen has SMA II, a genetic condition that interferes with motor neurons, which control movement. Because the muscles don’t receive motor signals, they begin to atrophy from lack of use, affecting the patient’s ability to breathe, swallow, and move independently. While the media is reporting on her condition as an “incredibly rare” disorder, around one in every 6,000 babies has some form of SMA, according to the Muscular Dystrophy Association. Though many outlets assert that people with SMA II rarely survive their childhoods, this is inaccurate. Life expectancy can vary depending on the quality of care received and the specifics of someone’s condition, but is on average “intermediate” — shorter than that of non-disabled people, but not inherently fatal, though many people do ultimately die of complications like respiratory failure. The condition is considered progressive, but not terminal. “Incurable,” as the media puts it, is not the same thing as “terminal.”

Bolen experiences muscle weakness, contractures, difficulty breathing and eating, and an increased risk of respiratory tract infections. She uses a wheelchair for mobility and breathes with the assistance of a ventilator. Like other people with SMA II, she needs assistance with many tasks of daily living, including getting in and out of bed, bathing, and using the bathroom.

In 14 years, she has endured 38 surgeries. This level of medical intervention is highly unusual for people with SMA II, some of whom have spoken out in concerned surprise about the number of surgeries she’s had. Bolen also reports that she experiences extreme pain daily, with an average pain level of around seven out of 10, which is also unusual. She asserts that she has a very poor quality of life due to her disability and associated complications, and says she would like to go off her ventilator, enter hospice, and die.

While the headlines have been filled with her story, they have primarily presented it from a non-disabled perspective, and the notion of “better dead than disabled” is common in that context (look to the wild success of Me Before You). For disabled people, though, those headlines ring alarm bells. They argue that it is important to separate out disability and terminal illness, because disability rights activists worry that a failure to do so will create a slippery slope.

Is Jerika Bolen terminally ill, or is she disabled? Is disability itself a terminal illness in the eyes of society? The case of 17-year-old Cassandra C., a teen with cancer who wanted to refuse treatment, highlighted the debate over medical choice for minors with terminal illnesses, and Bolen’s case is being wrapped in the same narrative. There’s a big difference between cancer and a progressive disability, though, and it’s not being addressed.

Even for those who view her disability in the same light as a terminal illness, just as with Cassandra, age plays a very important factor. Some physician-assisted suicide supporters have concerns about whether she can make an informed choice at just 14. We already know that the adolescent brain isn’t fully developed, and that teens tend to make more impulsive decisions without respect to long-term implications. It introduces an element of discomfort to her case that was absent in 29-year-old Maynard’s.

Disabled people spend their lives being told they don’t deserve agency, that other people around them know what’s good for them.

Her race complicates matters even further. People on both sides of the debate are making some disturbing assumptions about her degree of agency, understanding of her condition, and ability to make choices, and they’re making the same assumptions about her family. The origin of these assumptions is social — for example, the government agencies that decide whether parents are fit to care for their children use racialized standards, while black parents are blamed when their children don’t succeed in a racially unequal school system.

The discussion also tends to elide the very intersectional aspects of race and disability, and the fact that children like Bolen are at a profound disadvantage not just because they are disabled, but because they are children of color. We know that health-care disparities determine the level of access to care children of color experience from the start, and that’s true of disabled children as well. Medical racism is a very real and documented issue: Bolen may not be receiving the best quality care, especially when it comes to pain management, as we know pain is under-treated in black patients.

Some in the disability rights community are condemning the circumstances of this case, and posting open letters and videos saying she should change her mind, suggesting that if she knew more about living with SMA II and similar illnesses, she might feel differently. Bolen is becoming uncomfortable with the attention — one popular video making the rounds has been sent to the family repeatedly, and her mother expressed frustration, describing the outreach efforts as “upsetting.” At times, these communications cross the line from advocacy and education to suggesting that people know better than Bolen, denying her the self-determination they claim to be promoting.

Advocates, meanwhile, argue that she should have the right to decide to die if she’s suffering, as she says that she is. In making their case, they evoke the same language of autonomy that disabled people do when talking about their rights. Some of that advocacy includes disseminating inaccurate information about SMA and disability in general, and reinforces not that Bolen should have autonomy, but that disabled people should want to die.

But it also carries a grain of an important truth. Disabled people spend their lives being told they don’t deserve agency, that other people around them know what’s good for them. Children are also legally subject to the will of their parents when it comes to medical care and managing their disabilities. In their advocacy, both sides of the debate are ignoring Bolen herself, sometimes with an agenda in mind, whether it’s fighting assisted-suicide laws or promoting their advancement. Focusing on individual cases can create a flashpoint for conversation, but is it fair to treat people like Bolen as political footballs?