The Slippery Slope
Ten years ago Terri Schiavo, a severely disabled woman living in Florida, was starved to death—US courts upheld her husband’s decision that, in effect, Terri wouldn’t want to live this way, and so her life supports were removed. Many empathized with the court’s decision, stating that Terri was not mentally capable of expressing her wishes. As I sat in my wheelchair outside the hospice facility where Terri was dying, I knew it was a watershed moment that would jeopardize the lives of all Americans with disabilities.
Now a decade later, it happened again—but this time, the patient was, without question, totally competent. David “Chris” Dunn, a patient at Houston Methodist Hospital, was completely cognizant and had expressed a desire to live; yet hospital administrators wanted to end his treatment against his wishes. The Texas Advanced Directives Act allows healthcare providers to remove life-sustaining treatment from a patient even when doing so overrides the patient’s desire and right to live. Chris’ family fought on his behalf, but sadly Chris died of natural causes while they awaited a judge’s decision. The family is rightly going to continue their case challenging this unjust law in Chris’ memory.
What happened to Terri Schiavo has opened a floodgate of abuse against the weakest and most vulnerable in our nation. What disability advocates feared ten years ago has come to pass. Although Chris Dunn was able to make known his wishes to stay alive, the hospital would have none of it and persisted in trying to end his treatment.
How Did We Come to This?
In the 23 years since the passage of the Americans with Disabilities Act (ADA), I have watched its most celebrated ideals erode and crumble under a double standard. I had the honor of serving on the National Council on Disability when the ADA became law, and ideally, it was intended to guarantee the basic rights of Americans with disabilities. Many saw the ADA as a law which would help move society beyond the premise that one is “better off dead than disabled.”
I am amazed, however, at how much people’s fears of disability have eroded the most basic of human rights, especially now that so many more people are surviving disabling conditions. And when society’s fundamental fear of disability provides the framework to legislate policy, the outcome can only result in a double standard.
First, it was assisted suicide laws. For example, people with dementia and depression have already taken advantage of assisted suicide.[1] And in the Netherlands, people with ALS have had their physicians administer aid in dying.[2] How ironic that personal autonomy is employed to empower persons with disabilities to kill themselves, rather than enabling them to live independent lives with dignity.
A double standard of rights is now being applied to the most vulnerable among us: infants with disabilities. On December 13, 2013, a couple was awarded $50 million in a landmark wrongful birth lawsuit after their son was born with severe disabilities.[3] Although this lawsuit was motivated by claims that the hospital and lab did not follow through with its obligation to rightly screen for a particular rare genetic anomaly, nevertheless this ruling sends a clear message that a person with a disability may not have a life worth living. This decision has put more pressure on healthcare professionals and insurance companies to test for any and every possible abnormality, thus putting more lives at risk. So while a disabled person’s civil rights are recognized under US federal law, those rights are nullified when confronted with stereotypical notions about the “tragedy” of a disabled person’s existence.
This double standard is glaringly obvious in the Belgian Parliament, which ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2009 but legalized euthanasia for children with disabilities in 2014.[4] Article 10 in the CRPD clearly declares that “Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”[5] The question is, how can Belgian legislators insist that people with disabilities have “the inherent right to life” yet extend a so-called right-to-die to not only adults, but shockingly, to minors who feel burdened by their disability?
It seems that the rights of a person with a disability fall under a subset of other, more significant rights—that is, the right of an individual to choose, especially if that choice involves life and death.
Incredibly, the American Medical Association has now classified obesity as a disability.[6] How can we, with a clear conscience, widen the definition of disability to include any manner of physical condition yet ignore the plight of infants with spina bifida, Down syndrome, or cerebral palsy? We need to make up our minds. We cannot logically widen a definition of disability to include an unlimited number of conditions in order to legislate protection and then claim that it is perfectly morally permissible to prevent a person with a disability from being born or kill them once they are here. To say the least, it’s a haphazard approach to a critical social issue.
The problem with this double standard of protections is that it pits one person’s rights against another, making the exercise of rights nothing more than a national competition between “who is more victimized than whom.” When this happens, society splinters into groups of arguing individuals, all in pursuit of giving their arbitrary determination a showy kind of dignity by calling it a “right.”
What kind of society do we want? If we are seeking a virtuous society, then we must defend the rights of the helpless, not nullify those rights so we can justify destroying the helpless. The right to life must not be exposed to a double standard. It benefits all of us to minister to those who are hurting, not agree with them that life isn’t worth living. I fully admit that because we as the church aren’t stepping up to our calling to defend the weak and vulnerable, we are gradually seeing each of our values—God’s values—eroding one by one (Ps 82:3). This will hurt everyone in the long run.
God is the giver of life, and he is the only one who should have the power to take it. He gave human beings the ability to develop medicine for the human good in order to help reverse the effects of a fallen world. Allowing physicians to kill patients pushes the moral limits of medicine beyond what they were intended to do.
A Word about Life and Death
Nearly five decades have passed since that fateful day when I dove into shallow water, crunched my neck, and floated helplessly paralyzed, facedown in the water. I hardly ever think about that day any more, it was so long ago. But the other day, a visitor to our Joni and Friends’ office asked, “Didn’t you panic when you were in the water? Weren’t you afraid of dying?”
I had to reflect, wondering, Did I panic? Was I frightened? Strange as it may seem, even though I was helplessly floating facedown in the water, I had no fear. Although I knew that water was about to flood my lungs, a deep and powerful peace held fear at bay. Psalm 68:20 says, “Our God is a God who saves! The Sovereign Lord rescues us from death.” This verse means that our sovereign Lord is in the business of saving lives.
Albert Barnes once explained it well when he wrote, “All that pertains to deliverance from death, all that prepares for it, all that makes it easy to be borne, all that constitutes a rescue from its pains and horrors, all that follows death in a higher and more blessed world, all that makes death ‘final,’ and places us in a condition where death is no more to be dreaded—all this belongs to God. All this is under his control. He only can enable us to bear death; he only can conduct us from a bed of death to a world where we shall never die.”[7]
As it turned out for me, my sister Kathy rescued me before I began to drown, which tells me that, yes, God will rescue you, but often it’s at the last second. You will be delivered, but with absolutely no time to spare. His grace will uphold you, but sometimes it’s not ministered until you come to the absolute end of yourself. Yes, I survived that diving accident, but by the skin of my teeth.
And it’s why, to this day, Psalm 18 means so much to me where it says, “The ropes of death entangled me; floods of destruction swept over me. The grave wrapped its ropes around me; death laid a trap in my path. But in my distress I cried out to the Lord; yes, I prayed to my God for help. He heard me from his sanctuary” (Ps 18:4-6). Only God knows the countless times you and I escape death every day.
So thank God for his sovereign protection over your life. Whether you have a broken neck or broken arm, God blankets you with his protection. And when your time does come to leave this earth for the next, God will rescue you, just like he always has. In the meantime, rest assured that your times are in his hands, and that is the safest place to be. In the meantime, share this Good News with everyone you know who has a disability!
Resources
[1] https://dredf.org/assisted_suicide/18_Oregon_abuses.pdf
[2] https://www.nejm.org/doi/full/10.1056/NEJMsa012739
[3] https://www.disabilityscoop.com/2013/12/13/couple-awarded-50-million/18968/
[4] http://www.un.org/disabilities/countries.asp?navid=17&pid=166
[5] Final report of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, pg. 12. http://daccess-dds-ny.un.org/doc
[7] Barnes’s Notes, Electronic Database Copyright © 1997, 2003 by Biblesoft, Inc. All rights reserved.