Sunday, July 5, 2009

Better Off Dead

The title of one of my favorite movies now seems to be an ironic punch line to my feelings about life.

I am coming to terms with the comments and feelings of people I know and love concerning the right to life and where that line lies. I guess this has come to mind again this week because I have had a few chats with a very Catholic guy I knew in high school. We didn't even come close to discussing that topic, we just talked about everyday things. But he was someone who seemed to hold himself to the higher standard, and I admired him for that despite the fact that I did not see the need to even go to church.

What disturbs me is a comment by an old friend last year. She's a dear friend from college, and she has always been pro-choice. We both were. She asked me to be her bus leader partner on one pro choice march on Washington, and I did it happily. She got a degree in speech pathology, I believe, and she started working for the school system placing kids exiting special education in jobs in their communities. I thought it was a noble job. I still do.

But last Fall, she expressed deep concern that Sarah Palin intentionally had a Downs Syndrome baby. She essentially said she worked with so many special needs kids who were miserable that they would have been better off had they never been born. I was really freaked out by that. It pretty much defined my entire ululating wail throughout the entire election. Sarah Palin's choice to keep her child should not have become a political issue, yet it did. And I admire her for her choice. Not because I would have made that same choice, today I would make it but 10 or 15 years ago, I don't know that I would have handled the choice very well.

But it is a really a harsh thing to say that a kid is better off dead when you are trying to help them. I know and work with children who are autistic, downs, selective mutism, airborn food allergies, and just plain screwed up that my friend might classify as better off dead. She might have classified me that way when I was a senior in high school. It scares me, because I take such joy in many children that I cannot imagine making such a harsh judgement. My cousin had a downs baby about 20 years ago, and she was not prepared before birth, they didn't know. She flipped and wanted to put the baby up for adoption. But within a few days, she realized this was her child and she was going to take responsibility and raise her, and love her. And that is exactly what she did. My cousin has raised a very happy, funny, energetic girl who may face some rejection from the idiot population, but the world is a better place now due to my cousin and her daughter. A friend from high school chose to have her son after she found out he was Downs. It is sad that so many people shake their heads and say that kind of child would be better off dead when they don't have a clue to the joys of real parenthood.

I talked a mom I am friends with into letting her son, who is autistic, into my cub scout den. It took a year, they tried another pack first but eventually he ended up in my den. This is a boy I have known for 3 or 4 years, and he is such a doll. He is smart, and attentive, and creative, and my son loves him. So do I. He deserves to be treated as well as any other boy in my den (I have 10, and those in the know realize that is a huge den). He deserves the chance to learn knife safety, play games, and even help younger boys without prejudiced adults and children blocking his way. And with the fiercely viscious Mary behind, he will do just that. He's going to daycamp, last summer they put him in a lower unit because he was austistic. This year he is mine and with my boys because I think he can do it all. And he can, his parents know it and I do too.

Please, please, never write anyone off. Back in High School, I don't think my Catholic friend wrote me off, as serious and judgemental as he was. He left a small bit of room for reasoning. He was a smart guy. No one is better off dead. I am sure people said it about me once, special needs or just plain misguided. I know it's hard to work with teens who are wretched and "wish" they were dead, but many teens are like that, not just special needs kids. Don't write them off. Give them a chance, and teach your children to do the same. You might easily find a place in heaven on Earth if you do.

6 comments:

Anonymous said...

I don't remember saying better off dead but then again we disagreed on many dialogs associated with Sarah Palin's campaign and there were numerous misunderstandings of the various comments. I have spent my career working with individuals with disabilities and it has exposed me to the reality that these individuals live very different lives than the average person. Without constant support, protection and guidance, they are extemely vunerable people. Surprisingly, not every family is set up to provide the necessary supports. There are multiple barriers throughout society and some start at home. I have stood up and championed many indivduals throughout my life, provided families and individuals with professional and personal advice. If I were given the opportunity to choose whether my child was born with a severe disability, I personally would not follow through with the pregnancy. This is not to say that that others should consider this a blanket statement for their lives. Pro choice ensures that everyone decide what is right in their given circumstances, limitations and abiltiies. Do I think that some people have made the wrong choice...sure. I have met more than a few through the years.

My comdemnation of Palin sat with the automatic acceptance that she was an expert on issues related to having a child with a disabilty a few months after her child's birth. How does that work? She was presented as a politician who could relate to individuals and families struggling with all disbailities- not just Downes. It was suddenly part of her political machine and quite frankly, inappropriately so. Finally, she had a pregnant teen in her midst and a newborn with a disability- maybe her attention should have been on her family? There is a time and a place for having it all... that was neither.

Anonymous said...

One more thought...I want to clarify, I am discussing the detection of a severe life impacing disability. I have said many times that each person has their own bag. I don't believe there is a person alive that does not face a challenge in some way, shape or form. Speech impediment versus severe mental retardation- two very different things.

RebelAgnes said...

I hope that people are not as judgemental of you for the mistakes of your children. I also hope they do not perceived tehmselves as so knowledgeable about your personal life that they feel comfortable making those judgements.

Anonymous said...

What? Mary, I have been exposed to lives that you can't even fathom and made choices throughout my life that have provided my children with the opportunity to not only support themselves and their shortcomings but developed their abilities to support others as well. Honestly, being in a position of advocacy for so many years makes you realize that people make choices that are self centered and conveneient far more than directive and productive for the greater good. When you don't have a voice or have no capacity to perceive other paths - you are screwed.

RebelAgnes said...

Sorry, I am on vacation and not really wanting to process this right now. I disagree with you and yes, was very upset by your comment last year. That's really about all I have to say. You could have read this long before I posted my Australia comments.

Anonymous said...

Mar...I had so much fun catching up with your trip down under that I read them of your comments and was suprised to see your entry. I felt a need to defend my perspective given the gross misunderstanding. No need to respond while you are on vacation. No need to respond at all. Enjoy life!