Wednesday, June 13, 2012

Who's a burden? Who deserves help?

Sometimes I despair at our culture's narrow sense of what makes a person 'matter' or, as Tracey Chapman sang in Fast Car -- what allows a person to "be someone, be someone."

Are you your paycheque, your test scores, how well your body fits Western conceptions of beauty or athleticism or any other of a number of skills and attributes?

If you can't measure up (cause you're an infant or a senior or past your prime as an athlete or severely depressed or unemployed or disabled or terminally ill) does your value as a human being plummet?

This piece in the Huffington Post by my friend Ellen at Love that Max got me thinking: Are kids with special needs really a burden to society?

Ellen wrote about an acquaintance who has a son with Asperger's who made the following comment:

"If there are 10 kids with mild autism and one with profound autism, the money should go toward helping the 10 kids because they would be 'better candidates' for contributing to society."

I guess a similar argument could be made for educating only students with gifted IQs, since their brains can potentially plow back more into society than those of their average peers.

But abandoning that child with profound autism and his or her family will result in greater costs to society over time.

As Dr. Chris Feudtner, director of the department of medical ethics at the Children’s Hospital of Philadelphia, noted in a previous BLOOM piece: “Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient? If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?"

In the past religion kept alive the idea that every human life was sacred and had a fixed, immutable value. But since so many people have fallen away from religion, our worth has become variable and tied to what we do. That means that for all of us -- not just those with disabilities -- our value will rise and fall like a yoyo over our lifetime.

That is if we are allowed to live.

A bioethicist and philosopher in a recent peer-reviewed journal attribute the right to life only to individuals who can appreciate their existence and have ‘aims’ or dreams for the future, so that depriving the person of that life would be experienced as a loss. If individuals can’t value their life and plan for the future, because their brains are in the newborn state, or because they have a disability, the philosophers categorize them as non-persons who would not be harmed if killed. “Merely being human is not in itself a reason for ascribing someone a right to life,” is how they so eloquently put it.

Because of the idea that a disability reduces a person, creating acceptance for people with disabilities often seems to involve insisting that people with disabilities are "the same" as everyone else -- instead of broadening our concept of human diversity.

It reminds me of parents who proclaim: "My child doesn't see colour, my child doesn't see race." Well we know that's patently untrue. But it's possible that children haven't yet adopted the stereotypes associated with skin colour.

In the same way, children see physical, intellectual, communication or social differences, but don't necessarily ascribe something negative to them.

At Noah's Dad, I felt uneasy when I read a blog recently titled How problem-solving is an indicator of intelligence for children with Down syndrome. Rather than expanding our understanding of intelligence from that of book intelligence and IQ, it seemed that the authors were trying to convince readers that their son has the same problem-solving abilities as his peers. And maybe he does. But what about the child with Down syndrome who doesn't? Is that child in any way less valuable?

Ellen says in her Huff Po piece that her son Max, 9, with cerebral palsy, is "as worthy as President Obama, Bill Gates" and a list of other modern-day successes.

I agree, but not because of his abilities and potential, as she suggests, when she says: "Who knows what Max is capable of?"

To me, that way of thinking is a trap -- applying the old measures of success to our kids and saying they're going to stack up against the best of them.

I think we need to develop a new value system that sees human worth as a birthright -- as something that can't be elevated or marred by ability level or what we do at any moment in life.

Ellen eludes to this when she says "My son has made a difference in this world and will continue to do so, in his own way."

In our culture, normal is valued and different isn't. As parents of children with disabilities, it's understandable that we'd feel intense pressure to prove to the rest of the world that our children are, indeed, normal.

I know I did this when Ben was younger.

I felt positively gleeful when the psychologist told us he was in the low-average range on his first psych test. When a preschool teacher doing a developmental assessment said he was normal cognitively, I sent out letters about it to family. I had all manner of explanations for why he couldn't do what his typical peers were doing, but was, in fact, brilliant. But really, I just wanted him to be valued and accepted, to belong in the world.

Isn't that, bottom line, what most people are searching for in life?

I still want that, now that Ben's 18 and it's obvious that he'll never 'catch up' or 'pass' as a person without disabilities.

But to see Ben's gifts requires breaking out of conventional notions of normalcy, worth and success.

I'm not sure why philosophers chose cognition as the quality that defines us as human -- thus stripping people with intellectual disabilities of personhood. In this thinking, the higher your IQ, the more human you are. I guess this explains the 'study-drug' phenomenon described recently in the New York Times: a growing number of high-school students who abuse stimulant drugs like Adderall in a bid to get straight As and high SAT scores.

Why didn't the philosophers, instead, choose the universal desire to belong with others as what makes us human?

Don't you feel that longing every time you hear these words in Chapman's Fast Car

And I had a feeling that I belonged

And I had a feeling I could be someone, be someone, be someone.

Why didn't the philosophers choose compassion, love and interdependence as the defining qualities of humanity?

I recently listened to a radio interview with Jean Vanier, the philosopher and theologian who founded L'Arche. L'Arche runs homes for adults with intellectual disabilities who live with assistants who ascribe to the philosophy that we can learn about ourselves by living with people with disabilities.

"I think this is the big challenge for humanity," Vanier said. "Can we get together? Can we let the barriers that separate people fall down? If we can move from the place of fear and the place of prejudice and compulsions, just to welcome people, to learn to accept people as they are and to see how beautiful they are."

In talking about a L'Arche resident who was violent, Vanier names the fear within all of us that's awakened by people who are outwardly different. "He triggered in myself my own fragility, my own weaknesses, my own anguish. I could see coming up in myself capacities for violence."

Perhaps that's why people in our culture don't want to "see" disability -- or death, for that matter -- because it forces them to recognize their own vulnerability.

I remember thinking something similar after my dad died: Love is the only thing that endures. Nothing else matters. 


I have never commented here, but felt compelled after reading this post. It is superbly written and thought provoking. I agree, 100%, with everything you have said. Dr. Seuss once wrote, "a person's a person, no matter how small". I like to think you could interchange any number of words with 'small', like 'smart', 'beautiful', 'athletic' etc. Oh, and by the way, Fast Cars by Tracey Chapman is one of my favorite songs!

BRAVO, Louise, for all the excellent points and brilliance you've added to this discussion. I really liked what Dr. Feudtner said about looking at medicine from the societal perspective of including people connected to the patient.

And, YES: We need a system that sees human worth as a birthright. As parents and other people like us continue to speak out, I can only hope we raise awareness and shift perspectives.

Kris, it's funny but I was going to reference that Dr. Seuss line in my post, it's from Horton Hears A Who. I cut it out, it just didn't seem to fit even though the spirit of it did.

I should have expanded on the reason I chose to quote Dr. Seuss. My daughter has a chromosomal condition that causes her to be 'small' in stature. When I was pregnant with her I was asked by a respected physician colleague whether it would be better if I terminated the pregnancy. Obviously I chose not to (for many different reasons). She is a wonderful 'person' with a generous soul, regardless of her size, intelligence, appearance etc. Anyway, you can see why the Dr. Seuss comment has special meaning for me!

louise, thank you for this fantastic post. of course we all want deeply to be valued, accepted and to belong.

it is clearly our task to model living with compassion, love and interdependence so that hopefully they do become the defining qualities of humanity...

and i agree, love is only thing that endures.

Great post Louise.

I second your comments about love. When someone dies, aren't the stories of the unselfish caring deeds the deceased did the ones that seem to matter the most? Has anyone's eulogy ever focused on their IQ scores?

There is a disconnect, in my view, about this sentiment and the general agreement that "love matters most" by many people in society and especially within the medical community when it comes to judgement of quality of life. When a disabled child is loved and welcomed into a family willing and able to care for him/her, there does not seem to be a perceived value to that. In fact, many ethics-based papers oppose the idea of including the value of the child to his/her family and prefer to determine 'best interest" of the child in isolation of family and community.

I have thought that the disregard of the child's contribution to the family is troubling when beneficial care for a child with disabilities is withheld on the basis of resources. It seems that a cost/benefit analysis is made where benefit relates the child's potential to contribute to society. Yet, when there is a purposeful disregard of the disabled child's contribution to family and community (teaching love, caring and compassion etc) then the benefit assessed is limited to a monetary benefit of tax contributions. This is shallow and inherently discriminatory.

Dr. Feutner really hit the nail on the head.

Thanks Louise!

The Following is words are a gift from Louise kinross:

"And I believe every human has inherent value that is not dependent on them doing anything. Love is the only thing that endures. Nothing else matters."

I get it now. I'm sorry that I took so long.


I haven't commented here before either, but what a fantastic post! I think I will be thinking about it for days. You are spot on when you say that Love is the only thing that matters. I learnt that lesson when my son was born.

I think we have to be thankful for our present society and remember that societal attitudes can all change within a single generation.

As parents we must also not hoard resources when we see that they are not effective nor necessary for our special needs son or daughter - and give a chance to the other 10 children.

What a beautiful post! Thank you for articulating so well that we each have inherent value.

As a parent of a child who was born "with challenges" or "differences" however you want to describe it, I have come to realize that in the end I can mourn that my child was not born "normal" but it really isn't about me or societies idea of normal that is important but how my child is able to cope with their circumstances. We cannot know what our children think and feel because that is their reality. If I feel sad or angry those are my emotions and my reactions to what I believe is my child's reality. (I don't really know what their reality is). In my opinion it is a given that we have inherent value by the simple fact that we exist and we were given life no matter are abilities or disabilities. I believe we, as parents of children living with extraordinary circumstances are charged with the task of helping them to truly understand their inherent value. This is not easy but I too believe it begins with love, acceptance but also forgiveness.