Autism, Right to Life

Human Life Review Article: “Alfie Evans, the Philosophy of Futile Care, and the Right to Life”

What follows is my most recent submission to Human Life Review which appeared in the Summer 2018 issue. If you would like to subscribe, please visit Human Life Review. It’s a great publication!

I followed the case of Alfie Evans in the United Kingdom almost from the beginning as his parents fought to get him tested and treated for an undetermined medical condition. The hospital argued that his illness was degenerative and that there was no treatment—even though he was undiagnosed. His parents wanted him released to a hospital in Italy that was willing to evaluate him, work on diagnosing his condition, and provide any possible treatment.

The parents wanted their son and were willing to have him in whatever condition he was in.

The hospital won all the legal battles and, again, prevailed in court to set a date and time when they would remove Alfie’s ventilator and, from my understanding, all food and water. According to Tom Evans, Alfie’s father, some nutrition was administered after the family requested it.

While children and adults with disabilities are accommodated more easily in society today, there is a dark underside. Ethicists, for example, don’t agree on what comprises life-saving treatment versus futile treatment in cases like Alfie’s. If doctors believe that a patient will not improve or that a chronic and severe medical condition cannot be cured, very often the recommendation is removal of all life support, including food and fluids. It doesn’t matter if the patient is not terminal.

This philosophy has an impact on those with disabilities now and in the future.

I have two boys who are on the autism spectrum. One of them will likely do well in life—with some help along the way. Nathan’s communication and social skills are better because he was diagnosed earlier and received therapy and services. His brother Peter, however, was diagnosed right before he turned three and while he received therapy early, he will always need to live with us and, after my husband and I are gone, he will have to live with one of his siblings or a caregiver.

Peter, who just turned 15, has limited communication skills, but talks in complete sentences (when he is not repeating dialogue from his favorite children’s videos). He is perfectly capable of getting into the refrigerator to eat leftover pizza or scrounge through the pantry to find his favorite fish crackers. He can get a bowl of cereal without help and microwave things like popcorn. But he cannot live independently. If Peter did, he would burn down the house by lighting candles or the gas stove, he would binge eat all the ice cream in the freezer and never eat a vegetable again, and he would have no means of buying groceries or getting to the store.

So, does this mean he is unworthy of life?

Nazi Germany thought so.

My son’s life would have been considered, “life unworthy of life,” or he would have been classed as a “useless eater” because of his disability.

“Life unworthy of life.”

Think about that for a moment.

Who determines who is worthy of life and who is not?

If we believe in God, and I do, then we would say the He is the ultimate authority on life and life should end on His timetable and not before. But if society removes God from arguments regarding killing the disabled, then who decides? What determines if someone is worthy or not?

Abled-bodied men and women, that’s who. And they decide who lives and who dies based on an increasingly sliding scale of what is a good life and what is not.

And more and more, the Alfie Evans of this world are euthanized—killed—“put out of their misery” because someone, somewhere says these lives aren’t worth it. They argue that it is “futile” to treat them because their condition cannot be improved.

It wasn’t long after Hitler’s propaganda war on people with disabilities that he authorized the T4 or “mercy death” program. According to the U.S. Holocaust Memorial Museum, from 1939 to the end of the war, approximately 275,000 individuals with disabilities were killed in the program.

And it was only a stepping stone to the destruction of millions of Jews in the Holocaust.

Once we determine that there are some lives less worthy than others, it’s only a matter of time until someone determines that those with disabilities, physical or mental, are somehow “less than.”

My son is a human being—not a plant, not a machine. He is distinctly human just like Alfie Evans was and because of this, and no other reason, he deserves to live. Peter—and children like Alfie—should be able to live life to the greatest degree they can simply because they exist.

Proponents describe euthanasia as merciful and compassionate but there is nothing compassionate about killing a vulnerable person with a disability. The “compassion” everyone argues about is based on people in good health looking at someone with a disability and saying to themselves, “I wouldn’t want to live like that.”

To destroy lives because we can’t “cure” them or make them better is a barbarity that harkens back to the days of the Roman Empire when parents who gave birth to a weak child would abandon the child—exposed to the elements and predators—to die. Despite our advancements and our talk of living in the Information Age, it seems we can be just as ignorant and barbaric as our ancient ancestors.