A Spanish man living with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is fighting to make sure people know his life — and the lives of everyone with medical conditions — are worth living, despite the cultural belief otherwise.
Jordi Sabaté Pons was diagnosed with ALS over six years ago and has been an outspoken advocate for life ever since. Advised to undergo euthanasia, Pons refused, and instead, spends his life fighting to ensure people with ALS are recognized as valuable members of society. He clearly has an uphill climb, which was made apparent during an interview with Spanish media outlet Vozpópuli, when the journalist implied that a person can’t love life if he has ALS.
Vozpópuli: I extract[ed] this from your profile on social networks: “I cannot move, speak, eat, or drink and I breathe with difficulty. I love life”. It seems that the two parts of the sentence are contradictory, but there you are … Is it difficult to maintain that attitude?
Pons: I honestly do not see that they are contradictory. I love life because I can still enjoy many things: I can see, hear, feel; And just for those simple things I am already happy. ALS, by not affecting cognitive and intellectual capacity, allows me to be myself, who I have always been, and I like that a lot. To me honestly, it is not difficult for me to have this [attitude], it comes out on my own. Look, I think that when you hit rock bottom, a force suddenly arises that makes you go back and appreciate the positive things that life gives you. That is, at least, what has happened to me.
Pons further explained that for the most part, people with ALS have been abandoned by the government. “We convert our homes into ICUs without having the help and assistance of qualified health personnel,” he said. “They abandon us and if you don’t have money to pay for your vital assistance we have only one option to choose from, death… [f]rom my point of view, passing the ‘euthanasia law’ before guaranteeing a dignified life first is an atrocity. Currently, we cannot choose to live or die freely. We only have aid to die, so we have no alternative other than death. In Spain, 96% of ALS patients cannot afford the cost of the disease and, with the approval of euthanasia, death is already being put on a platter. It is inhuman, the aid to live would have to [take] priority before everything.”
Sadly, Pons is entirely correct. Overwhelmingly, people with disabilities are treated as victims at best by the government and society. At worst, they are treated as though they should do the world a favor and die. This mindset spans the globe, regardless of how positively people with disabilities may see themselves and their lives. The cultural message is clear: a life with a disability is one not worth living.
Wrongful birth suits and abortion
A new trend, as prenatal testing becomes more widely available, has been so-called “wrongful birth” lawsuits. In such a lawsuit, parents argue that doctors failed them by not diagnosing their child with a disability during pregnancy, thus robbing the parents of the chance to have an abortion.
One such mother, Edyta Mordel, claimed that her son’s life is too “difficult” to be worth living. “I saw how difficult his life is and I would not have continued my pregnancy,” she said during a court hearing. “I would not have wanted a disabled child and I would not have wanted my child to suffer the way that disabled people suffer. I wouldn’t want to have brought my child into the world like that.”
It has now become the expectation that parents aborted their child due to a prenatal diagnosis. When children are born with a disability, some people are not afraid to openly tell them that they should have been aborted. A four-year-old girl in a wheelchair in the United Kingdom, for instance, was screamed at by a stranger on the sidewalk. “The man was yelling in her face, saying she shouldn’t have been born, she was a drain on the NHS, a drain on society and that I should have had her aborted if I’d known she was going to be disabled,” her mother recalled.
Biologist Richard Dawkins has notoriously made the claim that it is ethical to abort children with disabilities and immoral not to, reaffirming this mindset in an interview earlier this year. “I think it would be wise,” he said. “I think it would be wise and sensible to abort a child which had a serious disability, which was diagnosed early in pregnancy. And I [suspect that] almost everybody does that in practice.”
Some have even argued that people with severe disabilities, like anencephaly, are not even human beings.
Lives deemed not worth living
The medical community, particularly in Europe, is all too willing to decide that certain lives are not worth living, typically because of a disability. And once they make that decision, the person has essentially been given a death sentence. In the United Kingdom, a shocking report found that people with learning disabilities were given DNRs (do not resuscitate orders) without their consent, or the consent of their families. At least 19 of these patients died.
Other families have said they received inadequate medical care because their loved one had a disability like Down syndrome. Children such as Charlie Gard and Alfie Evans were quite literally put to death because they were severely disabled — even as their parents were willing to pay out of their own pockets to get them medical treatment elsewhere. The United Kingdom government refused to allow these parents to seek other options for their children other than death.
In Canada, a man with a brain disorder was denied proper health care and instead was pressured to choose euthanasia. Likewise, a woman in Canada spoke out after a doctor suggested her disabled, but otherwise healthy daughter, be put to death.
Movies have even taken to romanticizing the euthanasia of people with disabilities — for the benefit of the able-bodied, of course — and when a woman protesting these movies jokingly asked for suicide donations, people actually gave her money to kill herself.
People with disabilities frequently point out that they are treated like burdens and dollar signs, not the full and equal members of society that they are. Able-bodied individuals are quick to suggest euthanasia, but are not willing at all to address the inequalities people with disabilities face, such as equal access to health care. Thankfully, people like Pons are stepping up to show the world that the lives of people with disabilities are very much worth living and that individuals with health conditions love their lives.
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