Pain does not bother me. Pain is my long time buddy. No pain I experience now comes close to what I endured as a child. I will never forget the pain I felt the first time I presented profound neurological anomalies. I was nine years old and woke up in severe gut wrenching pain. I tried to walk downstairs to watch Go Speed Racer go when I collapsed in a heap of pain and let out a blood curdling scream. My poor parents. Little did we know that day would radically alter my life and theirs. That day dominated my thoughts last night. My stomach was tightly clenched in spasm all night. My right hip and ass felt like they were on fire. I hardly slept. I am extremely tired. And yes my hip and butt are still burning. As long as I am active and get routine things accomplished I am good to go. On days like this though I am unable to suppress how badly damaged I am. By damaged I am not referring to my dysfunctional body. I take great pride in my body. It has served me well. I will die knowing I got every last ounce of energy out of my body. Where others see a host of bodily deficits, I consider myself lucky to have so much function. The damage that I am referring to is not physical but rather social. For me, the ordinary is impossible. What is commonplace for others is never that for me. My difference is ever present. The fact is for many I have a value negative life. For a scholar like Peter Singer and a host of other utilitarian philosophers my existence is unfortunate. My life is open to good natured debate. Is the pain I experience greater than the meagre quality of life I enjoy? Am I an economic burden of such magnitude that I should not exist and thus be denied basic health care? This line of reasoning chills me to the bone. It makes me fearful to access basic health care. I am not alone. Indeed, millions of people with a disability have similar concerns and fears.
A few years ago I bought the book Death or Disability? by Dominic Wilkinson. After the book arrived left it on my work table for weeks untouched. I had but one thought. Did the author wish I was dead? Is my existence such an affront, all things considered, should I not exist? I met Wilkinson two years ago and he and I spent many hours talking about bioethics. I liked him very much. Looking back, I no realize that disability is an amorphous poorly understood term--especially for bioethicists and philosophers. Disability can mean many things. A car can be disabled. A person can be temporarily disabled or permanently disabled. One can have a severe disability. A disability can be minor. One can be disabled in a myriad of ways. Regardless of where one falls on the disability spectrum, disability is bad. Disability is inherently negative. Any physical or mental impairment is bad in large part because it can adversely impact a person's ability to work, or worse, learn and become well educated. We people with a disability know we are perceived to be less because bipeds, typical people, feel free to share their views. At least once a year a stranger will come up to me and state "I would rather be dead than use a wheelchair". Recently I read about a mother with a profoundly disabled child who had a stranger come up to her and state that her child was living proof euthanasia should be practiced. Every person with a disability I know has had these shocking experiences.
When it comes to disability the work of people like Peter Singer continues to resonate and generate heated debate. Remember, disability is bad. This is a given. Believe me I get it. Human beings were not meant to be paralyzed. Nearly forty years of paralysis has taken its toll on my body. I get it at a visceral level. Sleepless and in pain, last night I took to surfing the internet and re-read a piece by Louise Kinross that concerned her reaction to Singer's comments in the Journal of Practical Ethics. Link: http://bloom-parentingkidswithdisabilities.blogspot.ca/2017/02/im-not-okay-with-disability-hate-being.html?m=1 Kinross wrote that "Singer said that parents should not be 'stuck with having to look after a really severely disabled child'. He said that a child with a severe disability can rob parents and siblings of happiness, and that a future child of the same parents might have a better life. 'Its a question of one life or a different life', he said. But he doesn't talk about the actual research on families rating children with disabilities and their siblings, the real challenges and rewards". I shake me head in wonder for I truly do not understand the man. First, Singer does not engage those parents that actually raise a child with a severe disability. For instance he failed to take up Eva Kittay's suggestion that he visit the facility where her daughter with a severe disability lives. In his work, Singer does not reference much less discuss the substantial literature written by those who care for people with a severe disability. The only person with a disability I am aware he was willing to engage was Harriet Mcbryde Johnson who he invited to debate him at Princeton University. Second, Singer is a utilitarian philosopher whose work has practical applications. For example, in the New York Times he argued health care must be rationed and that certain lives had less value. One of the examples he used was life with quadriplegia which he believed was inherently inferior. Link: http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html?hpw&_r=0 His work with regard to health care policy is taken seriously. In the Journal of Practical Ethics, subtitled A Journal of Philosophy, Applied to the Real World, Singer has been tasked to respond to questions posed by the editor and Theron Pummer. One question and answer has garnered much attention in the world of disability rights. Link: http://www.jpe.ox.ac.uk/papers/twenty-questions/
You said in an interview with Andrew Denton that if you and your wife had a child with Down syndrome, you would adopt the baby out. Could you explain the ethics of this and isn’t it a selfish decision? Could you elaborate on your views about disability, in particular why you think a life with disability is of less value and what you think the implications of that are?
I was assuming that there are other couples who are unable to have their own child, and who would be happy to adopt a child with Down syndrome. If that is the situation, I don’t see why it is selfish to enable a couple to have a child they want to have, and for my wife and myself to conceive another child, who would be very unlikely to have Down syndrome, and so would give us the child we want to have. For me, the knowledge that my child would not be likely to develop into a person whom I could treat as an equal, in every sense of the word, who would never be able to have children of his or her own, who I could not expect to grow up to be a fully independent adult, and with whom I could expect to have conversations about only a limited range of topics would greatly reduce my joy in raising my child and watching him or her develop.
“Disability” is a very broad term, and I would not say that, in general, “a life with disability” is of less value than one without disability. Much will depend on the nature of the disability. But let’s turn the question around, and ask why someone would deny that the life of a profoundly intellectually disabled human being is of less value than the life of a normal human being. Most people think that the life of a dog or a pig is of less value than the life of a normal human being. On what basis, then, could they hold that the life of a profoundly intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being?
What I find difficult to grasp is that Singer does not understand how hurtful his words are. I simply don't know how to respond. I feel as though Singer has engaged in this sort of debate repeatedly. The reaction is always the same. People with a disability and the parents of children with a severe disability are outraged and Peter Singer calmly replies as though nothing more than an interesting conversation is taking place. A conversation is taking place but it is one that is decidedly unbalanced. Singer is the scholar, a privileged man of considerable repute. I am a man whose life is perceived to be value negative. The bar is set very low. Remember, the question death or disability is subject to good natured debate.
Again, I don't get it. And, yes, I am scared. I read in Vox that budgets can be perceived as moral documents. Trump's recent proposed budget is a moral failure. Link: http://www.vox.com/policy-and-politics/2017/3/16/14943748/trump-budget-outline-moral The budget is more than a failure though. It is catastrophically bad. People will die. This is no exaggeration. To live with a disability is to live one short step from oblivion. Last week I read the following:
Living with a disability, I know how it feels to be different, to be judged by my appearance, have my intellect unfairly tethered to the physical prowess I lack, be talked over, gazed through, second-guessed, placated and belittled. The pressure I feel to be perfect is real. I have zero margin for error. My life, like so many others, is a daily endeavor to define, and often reshape, perception. I've never felt more vulnerable and scared, than I do living in Trump’s America. His administration's words and actions fundamentally contradict inclusion and tolerance. I worry that his endless vitriol will forever alter the way we interact with each other as Americans, and citizens of the world, by rationalizing and ultimately legitimizing negative stereotypes. Making sure this doesn't happen is our shared responsibility. Words matter. Context matters. Truth matters. Our voices matter. Regardless of the space we occupy on the spectrum of physical ability, our socioeconomic status, religious beliefs, who we love or the color of our skin, the greatest gift we can give someone is to examine life from their perspective. Doing so reveals the common threads of our humanity. Link:http://www.nydailynews.com/life-style/living-disability-trump-america-scary-hell-article-1.2992223?cid=bitly
The Trump administration has no soul. Humanity is absent. The one unifying theme is that Trump is no different than a grade school bully. The target remains the same--the person most vulnerable. The weakest, the least connected, the poor, the elderly, the disabled--we are all an easy target. Yesterday, I watched in stunned silence as the budget director Mick Mulvaney explained that eliminating the well-known and essential program Meals on Wheels was the compassionate thing to do because the program cannot demonstrate it is successful. This is a lie. Meals on Wheels saves lives. It helps the elderly remain in their own homes and delays entry into a nursing home. Meals on Wheels reduces the incidence of falling among the elderly. These facts are conveniently ignored. The Trump administration is big game hunting and Meals on Wheels is small time. The real goal is to eliminate the Community Development Block Grants program. This is what happens when you put business men accustom to dealing with the bottom line in charge of the federal government. The government Mulvaney has said has spent billions of dollars of tax payers money and we have nothing to show for it. He went on to state:
I think you know that Meals On Wheels is not a federal program. It’s part of that Community Development Block Grants (CDBG) that we give to the states, and then many states make the decision to use that money on Meals On Wheels. What I can tell you about CDBGs is that’s what we fund. Right? So we spend $150 billion on those programs since the 1970s. The CDBGs have been identified as programs since I think the second Bush administration as ones that we just not showing any results. We can’t do that anymore. We can’t spend money on programs just because they sound good. Meals On Wheels sounds great. Again, that’s a state decision to fund that particular portion, but to take the federal money and to give that to the states, and say look we want to give you federal money for programs that don’t work. I can’t defend that anymore.The federal program that Mulvaney states don't work are the exact programs I know that make life possible for many people with a disability. Indeed, at one point in my life I accessed Meals on Wheels. This program prevented me from being hospitalized. I did not have the ability to sit up and cook for a short period of time. I got by because of the kindness of others and the federal government. Kindness. That is absent these days. Humanity is certainly absent from the Trump administration. Last year Meals on Wheels helped 2.4 million people most of whom were elderly and disabled. Billions of health care dollars were saved. How do you quantify success to an administration that is openly hostile to the poor, vulnerable, and disabled? We are not "winners" to use a word that is repeatedly used by Trump. Trump's vision is stark--winners and losers exist. Mulvaney stated: You’re only focusing on half of the equation. Right? You’re focusing on recipients of the money. We’re trying to focus on both the recipients and the folks who give us the money in the first place, and I think it’s fairly compassionate to go to them and say look, we’re not going to ask you for your hard earned money anymore. I can only assume I am a recipient. I am a loser. The winners are tax payers. I am dependent upon the largesse of the federal government and the day of reckoning is upon us. I see this as Peter Singer ethics in practice. The question remains, death or disability? I know what the Trump administration thinks. Like Peter Singer and other utilitarian philosophers, negative value lives can be eliminated. Be afraid my peers. Be very afraid.