Posted on: April 17, 2020 at 7:07 pm

According to the CDC, as of 2013, there are an estimated 53 million people in the United States who are living with a disability, which is 1 in 5 adults. Many of those people have a severe disability, and 1 in 8 live with some kind of functional disability [1].

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Given these statistics, it is likely that you have, at one time or another, met someone with a disability, and perhaps even witnessed the struggle that they are facing. As with most things, however, it is difficult to understand what someone is going through when you have never experienced it yourself.

The rise of social media has given a platform for many of these people to more effectively share their experiences with the public. More often than not, these posts fall into the “inspirational” category and show people overcoming their situation and living lives with purpose despite their obstacles.

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While there is, of course, nothing wrong with these posts, they often do not depict the real struggle that someone goes through when living with a disability. For this reason, Holly Warland has chosen to document her life living with Limb Girdle Muscular Dystrophy (LGMD), and advocate for legalizing euthanasia.

The Bad, the Ugly, and the Devastating

The 28-year-old woman from Australia was diagnosed with the muscle-wasting disease, LGMD, when she was just eleven years old. It wasn’t until the last few years, however, that her disability began to fully take over her life.

She was working on her Ph.D. in neuroscience when her condition began deteriorating so rapidly that she was forced to discontinue her work. By the time she was 26 years old, she was already bed-bound.

With the help of her partner, she has been documenting her life and her struggles on her Instagram page, in an effort to show people what it’s really like to live with a disability. She does not want to be an inspiration, she simply wants to give people a glimpse of the horrors of living with a terminal disease.

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“With every day I get weaker, and my autonomy, comfort, and happiness, diminishes,” she said [2].

What is Limb Girdle Muscular Dystrophy?

LGMD is a rare disease that causes the muscles from the chin down to waste away. It is caused by gene mutations, and onset can happen at any age. The muscles that are the most affected are in the shoulders, the upper arms, pelvic area, and thighs. 

As the disease progresses, affected individuals gradually lose their mobility, and eventually end up in a wheelchair. Weakening muscles completely can change the shape of one’s body, and often results in a curved spine and joint stiffness.

Advanced stages of the disease can cause weakening of the heart, as well as breathing problems severe enough to require a ventilator.

There is currently no cure for LGMD, and treatment is generally focussed on patient comfort until they reach the end of their life [3].

Read: Perspectives: Choosing to Die Before Dementia Takes Over

The Case for Assisted Dying

Given the terminal nature of her condition, Warland is an ardent advocate for legalizing voluntary assisted dying (VAD) in her home state, Queensland, Australia.

Currently, VAD is legal in nine states in the US as well as the District of Columbia. These states include Hawaii, Maine, New Jersey, Oregon, Vermont, and Washington, and it is an option via a court ruling in Montana and California [4].

Assisted dying is a hotly debated issue, both in the medical world and amongst the public. There is, however, a difference between physician-assisted suicide and euthanasia.

Physician-assisted death is when a means of suicide is made available to the patient with knowledge of the patient’s intent to kill themselves. Instead of the doctor taking the patient’s life, he or she provides the means by which the patient can do the final act themselves (for example, providing them with a pill).

Euthanasia is when someone other than the patient performs the act that is meant to end the patient’s life. This is usually done via lethal injection and is performed by a physician.

It is important to note that both of these acts differ from other end of life issues, such as withholding life-prolonging treatment,  or orders against attempting resuscitation. In both of those cases, death is not actively being caused by the patient or physician, but instead allowed to happen, or potentially hastened. While there are moral and ethical implications involved in these situations, they are less-polarizing issues than actively causing death [5].

For many people who are faced with terminal illness, the option of choosing to end their own life provides them with a sense of control- it allows them to have some power over their own lives, something which has been taken from them by disease.

Elizabeth Goy, Ph.D., a psychologist at the Portland VA Medical Center and associate professor at Oregon Health and Science University, and chair of the APA Working Group on End-of-Life Issues and Care, has conducted extensive research on the topic.

“In our research, the main reason people voiced for wanting the option was that they really wanted to have control over the circumstances of dying,” she said [6].

Assisted death can also provide patients with terminal illness a way to avoid a prolonged and often painful death. It allows them to die comfortably and with dignity.

Research also shows that assisted death does not have a negative impact on the families who are left behind. Judith Gordon, Ph.D., a Seattle-based psychologist and clinical professor of psychology at the University of Washington, suggests that this could be because it forces families to confront and discuss difficult topics they might not have otherwise addressed.

“In this culture, there’s still a lot of resistance to talking about dying, even if someone is diagnosed with a terminal disease,” she says. “When people want to use this option, they need the support of their doctors and typically also want the support of their families.” [6]

One primary concern with legalizing assisted dying is that people of lower socioeconomic status might choose to hasten end of life because they’re not receiving the care that they need. 

“There are a number of ­marginalized populations that are legitimately concerned about whether they are getting all of the best options in care at the end of life,” Goy says. “We want to be sure we are attentive to treating pain adequately and addressing emotional experiences such as hopelessness, depression and despair, so that assisted dying does not seem like the only option.” [6]

Read: Mom-of-4 with Terminal Cancer, 45, Plans Her Death with Dignity: “I want to die on my own terms”

A Desire to Die with Dignity

Warland is a strong advocate for legalizing VAD. 

“The unfortunate reality for me is that this condition will eventually make life unbearable for me and I want a safe and reliant option to end my life when I am ready,” she said [7].

She explains that while she could choose to wait until she dies naturally, that could involve decades more of pain and suffering.

In the medical world, the more and ethical issues surrounding assisted dying are difficult to navigate. Many doctors decided to enter the profession because they wanted to save peoples’ lives, not end them. Dr, Dilip Duphelia explains that VAD is a moral dilemma for many doctors and that there need to be protections in place for them as well.

“It means that when you actually ask a doctor to assist them in taking their own lives, or to consider that they wish to take their own lives, that the doctor can actually then declare to the patient that ‘I actually have a religious, conscientious objection to do this’, or ‘I’m not comfortable in actually taking your life, because that’s not what my philosophy as a doctor is’,” he said [7].

There are many others, such as Dying with Dignity Queensland president Jos Hall, who believe that providing a comfortable and kind death is helping patients, especially when medication and sedation is not providing them with comfort or pain relief.

“When you see how people die currently, even with the best palliative care, it is not always effective,” she said [7].

Assisted dying is currently legal under limited circumstances in Victoria, Australia, and Warland hopes that soon it will be an option to her, too.

Read: Woman throws her grandmother an assisted suicide party

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Brittany Hambleton
Team Writer
Brittany is a freelance writer and editor with a Bachelor of Science in Foods and Nutrition and a writer’s certificate from the University of Western Ontario. She enjoyed a stint as a personal trainer and is an avid runner. Brittany loves to combine running and traveling, and has run numerous races across North America and Europe. She also loves chocolate more than anything else… the darker, the better!

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