Never a Burden
June 7, 2007 by Kristina Chew, PhD
Filed under Health
I should not have to say this: My son, who has autism, is never a burden. Never. I have had to change my life to take care of him, as has my husband Jim. There are plenty of difficult moments, anxieties, frustration, sighs but there is never a question that Charlie is always, always worth it. A day without Charlie—a life without Charlie, and autism—is unthinkable to us: Charlie makes everything better. I have had the “burden” language in my head—-the terrible notion that persons with disabilities are somehow a “burden” to their families or to society after reading the taped confession of Karen McCarron in which she refers to her daughter Katie as “a tough nut to crack.” This led me to recall defenses, or rather misplaced compassion, of McCarron that appeared last year and that sought to explain her killing her daughter. As I wrote on July 9, 2006, “Desperation” should not be a “fact” when raising a disabled child.
And then I recalled the release from prison last Friday, June 1, of Dr. John Kevorkian, described by one news source as a “passionate advocate for assisted suicide.”
That’s advocacy I am glad to be passionately not a part of.
Kevorkian was convicted of second-degree murder in the death of Thomas Youk, 52, a Michigan man suffering from Lou Gehrig’s disease. Referring to his release after eight years in prison as “‘one of the high points of his life,’” Kevorkian was met by Mike Wallace of 60 Minutes. Wallace’s reporting on the filming of Youk’s death “played a key role in Kevorkian’s conviction”; an interview with Kevorkian will be broadcast on 60 Minutes on Sunday.
I quote Dave Reynolds from Inclusion Daily Express. Not Dead Yet is quoted regarding Kevorkian’s media appearances; Not Dead Yet is the disability rights advocacy group which was founded on April 27,1996, shortly after Kevorkian was acquitted in the assisted suicides of two women with non-terminal disabilities.
“They’ll downplay his history of helping non-terminally ill disabled people commit suicide and portray him as some kind of martyr,” Not Dead Yet wrote in December. “They won’t mention his advocacy of lethal experimentation on death row prisoners or disabled infants at all.”
Many disability rights advocates have long opposed Kevorkian and his public crusade to legalize assisted suicide. They have argued that doing so would essentially make it “open season” for people with disabilities who are often considered a “burden” on society — particularly at a time when the cost of health care is high.
They have also noted that many people Kevorkian “helped” end their lives were not in the final stages of terminal illnesses, but instead had disabilities and were in emotional, psychological or social crises, which made them more vulnerable.
Never a burden.
He ain’t heavy he’s my brother …
Nah ain’t carrying my brother he probably is heavy, but I used to get right narked by all the carer garbage when I was looking after my mum as to the notion and talk of burden etc.
One weekend, a rare weekend I had a weekend away to attend a conference, the 150th anniversary of the birth of William Morris, wasn’t gonna miss that and my brother (heavy or not) took on looking after my mum so I could go.
The biggest mistake I made was to reveal in conversation what my usual occupation was, cos I will not forget the horror I had when someone said to me not to worry, that one day my mum would die and then it would all be over for me and I would be free.
Well one day ten years ago next month she did, and was that what I wanted?
No I almost wish I had have died at the same time too.
It is so sad that a person is now “rated” by the amount of dollars that a governing body has to spend to support them.
Very sad.
chrisd, your comment made me think of this article on “putting a price tag on death.”
Larry, even though I can no longer pick Charlie up, my left arm still has the muscle that developed from all the years I could–the things we carry may bend our backs and test our strength, and Charlie surely keeps me grounded.
I waited for years to get to have kids, and there has never been a moment that I’ve considered my twins a burden. I feel it is a privilege to get to watch their very idiosyncratic and always wonderful day-to-day development!
While I have no children, I often get a sympathetic look (if not an outright “I’m sorry”) when I mention that my brother has Down syndrome.
I usually respond that I’m not sorry I’m not Einstein or Tiger Woods. I doubt Tiger Woods could conceive of life without golf, and I doubt Einstein could have conceived of life without pondering relativity — but that doesn’t make MY life as it is any less interesting or valuable to me.
So just because Patrick doesn’t understand calculus (my favorite subject in school except for British Literature) doesn’t make his life less interesting or valuable to him.
And he’s NOT a burden — to myself, or anyone. I shouldn’t have to say that, either.
I am so tired of hearing about the “burden” of autism: the toll it takes on marriages, the stress it places on siblings, how much it costs the taxpayers to educate a child and provide services through adulthood, “one individual with autism costs society US $3.2 million dollars over a lifetime,” etc. Ugh. I am sick of hearing cool, detached “experts” tick off the negative factors of autism in such a way that quantifies the value of human experience and suggests that certain lives are simply worth more.
I was listening to Russell Roberts today on NPR criticizing the proposed U.S. immigration bill and its quota system for assigning U.S. visas. (They propose assigning points for various attributes, e.g. education level, age, english proficiency, etc. The ones with the most points get into the U.S.) Roberts suggested, tongue-in-cheek, that we should assign a similar point-based system for the existing residents as well. “Surely some of us aren’t pulling our economic weight. Surely some of us are a burden on the school system and the health care system and the law enforcement community. Surely some of us are not contributing to that elusive, uplifting goal of a competitive work force competing in the global economy.” It should be funny, but it just hit a little too close to home for me.
As a lifelong agnostic, I never thought I’d find myself alligning so closely with the Catholic church on an issue. But at least the church does not succumb to this eugenics-type thinking, and recognizes that, no matter one’s condition, every human life has value.
Why can’t people be valuable just because they are people? Existing and being able to experience existence and reflect on it (and I think that all people can and do do this, regardless of the supposed severity of their disability) is about the furthest from mundane as you can possibly get. It’s worthy of awe in and of itself.
Why can’t people be valued simply because they are valuable? Why is ANY “external” authority or justification needed, whether in the form of supposed monetary worth or religious affirmation? To me it seems as if trying to claim that people only have value because it “comes from God” (not that anyone is doing this in this discussion) is pretty much the same as claiming that people are only valuable inasmuch as their ability to contribute economically in a standard fashion. Mind you, this is not a “dig” at religion or at people’s beliefs; I’m sometimes irritated with other nonreligious folks who don’t seem to have done much thinking at all with respect to why ideas like Singeresque utilitarianism are deeply flawed.
However we got here, we still have the choice to shape civilization for better or for worse, and it’s pretty obvious — even from the objective standpoint — that flexible, diverse, inclusive societies are far better off in the long run than rigid monocultures. And plus, I honestly don’t think anyone should even NEED to explain why they consider a fellow person to be valuable; all that matters is that the valuation is there, and that should be respected.
Burden is such an interesting word. I don’t think it’s always a bad thing. If I’m carrying something physically heavy then I am carrying a burden by definition. And these burdens do make us stronger.
I think the problem comes when the word is used in regards to people and in such a negative way. I’ve had people say to me “You must be hoping Patrick will be able to live independantly so he won’t be a burden as an adult.”
I suppose, when we were first diagnosed, I did agonize over his future. But what I was doing was self-imposing an emotional burden I didn’t have to carry. When I finally let go of that worry and allowed myself to be happy with him no matter what his long term life looks like (living away or living with us forever) I became a much better mom and a happier person.
And if he requires my constant care until the day I draw my last breath I will never ever consider him a burden. He’s a joy and my life would be empty without him.