9/8/14

On Vaccines and Choices and Lesser Lives

My big girl had a wee bit of a meltdown on Saturday. You may have heard that a growing number of parents are refusing to vaccinate their children. The LA Times had a big story about the growing number of unvaccinated kindergardeners last week. You can find that story here. My girl heard me talking about the article with my younger daughter. She heard my younger daughter ask me why parents didn't want to vaccinate their kids, and then she heard me say, "Some people think vaccinations can cause things like autism."

And that was when the meltdown started. Actually, the meltdown didn't start right away, because at first she had to really think about it, she had to put all the puzzle pieces together. It was a while before I heard her crying in her room. It was a funny kind of crying, part grief, part heartbreak, part anger. She said to me, "What's wrong with those people? They would rather risk their child dying of some horrible illness than have a child like me, someone with autism."

Ah. There it was. And she was right. In all the debate over vaccinations, the unspoken truth is the one she recognized right away, and that most of us read right past. There are people who would risk their children getting something like polio or measles--illnesses that once routinely wiped out entire families--than have a daughter like mine, a daughter who is disabled.

Now, as the parent of a disabled child I can tell you right now that I would rather have a child without a disability too--so don't think I'm getting all judgey on you. I'm not. I'm just asking you to think about a truth that is veiled for most of us, unless, of course, it is a truth that is faced directly by you and you see it for what it is: a statement about what our society likes its humans to look and act like.

When my girl said all this to me, I said, "I can see why that would feel hurtful to you. But remember too, Autism is a spectrum. You are very articulate. You are in community college. But some people on the Spectrum never even talk. All most parents really want to know is that they can die and their kids will be okay. Some parents never know that. It is very hard."

"But even if they can't talk they are not less," she said. "They are just as good as anyone."

And this, too, is true. Is my daughter less because she has autism or epilepsy or learning disabilities? Is she less because she is not at Stanford? Will she be less if she cannot succeed in community college? What if she can never hold a job? What if she can never live independently? Will she be less then?

You're probably thinking, no, of course not. So would you want her as your daughter?

You can say no. I won't blame you. I know how profoundly hard it is to live with a person with special needs. These are not philosophical questions for me. This is my real life. And it is hard. I know that as much as I think my daughter is as fully whole as anyone else, that I live in a world where she will not be treated as whole, where she will have fewer opportunities, where her challenges will often make other people's lives more inconvenient. Not everyone will want to work with her. Not everyone will feel like she can pull her weight. And that that is a very difficult thing to contemplate as I get older and worry about what will become of her.

But think it through. Think it all the way through, the way she did. If you do not want a daughter like mine, if you would rather risk your child getting a deadly illness (and unless you are ready to deny history you must admit they are deadly) then aren't you playing a sort of eugenics game? Aren't you saying I am really only interested in this baby as long as it doesn't have a disability that  I believe might be caused my this vaccine. I would rather have my baby die than suffer through the parenting of someone with this disability or than see them suffer through that disability.

Hey! You can say yes! I won't judge you. Because parenting a special needs kid is not for the feint of heart (and believe me I am totally the feint of heart so I know).

But maybe what we really need to do is worry less about whether a vaccine might cause autism and more about how we can build the networks we all need when the myths of perfection or independence begin to unravel, as they will for all of us. For we are all of us imperfect and we are all of us dependent, and if we could see that our humanity lies in those imperfections and those dependencies then maybe we would see that we are all of us whole and good enough and that none of us is
less and that, because of that, we will always have someone's back and someone will always have ours.

20 comments:

sbready said...

wow!

Kat Ward said...

Brava, Margaret. Perfectly said. And perfectly said by your daughter. No one is lesser than another, whether someone is a member of mensa or someone with special needs. And I don't even like "special needs." All people have needs and require education, guidance, specialists who can provide training. Some people also need particular specialists to help them in areas the rest of us take for granted. We all need. We all count. In my eyes, no one is better than because if we open our eyes, ears, and hearts, we are privileged to receive the gifts from each of those around us. We do need to embrace our humanity, our imperfections, our dependencies—recognize them in ourselves and others. Have someone's back and they will have yours. Thank you, Margaret. Marvelous piece.

Cathy Perlmutter said...

Brilliantly stated. But our society does not have our backs. It barely pays for deadly illnesses, like measles. It certainly doesn't provide backup for longer-term disabilities. We live in a cruel, dog-eat-dog civilization. I wonder if people in social welfare friendly Scandanavian countries make a different calculus when they're thinking about things like vaccinations.

Daisy said...

Thank you for sharing this Margaret. I think that is a wonderful photo of you two, btw.

Margaret said...

Cathy, you are absolutely right. But it is more than a public policy issue. It is an issue in how we live our lives. How we build our families and social circles. How we ask for help. I'm horrible at these things, by the way.

Ann Erdman said...

Thank you for this thoughtful post, Margaret. My nephew Ryan, who is 15 and at the opposite end of the spectrum, is deeply autistic and nonverbal. He most likely will never do meaningful work, never have a signifacant other or a circle of friends in the way we define it. Many tears from now hen he is a senior citizen and my brother and sister-in-law (and I) are gone, it will be left to the next generation in our family to make sure they continue to be present in his life. You're absolutely right: For those of us with autistic family members, this is less about public policy and more about family support systems.

Ann Erdman said...

I meant "many years from now." A Freudian slip if ever there was one.

altadenahiker said...

Appreciate this thoughtful and heartfelt post very much. And it leads me to think -- we're all, every one of us, on one ism spectrum or another; thankfully mine has never been identified. It's only a matter of time.

Olga Hebert said...

Your daughter has a tender wisdom and you do not need to sell yourself short for having nurtured her potential. This was so touching a look under the mask of labels.

Rois said...


Mighty and truthful words from both you and your eldest girl child.Bravo to you both.

I personally would like to stick every no vaccine person on chemo for awhile, that will open their eyes to what is out there ready to stomp you down. Scariest two years of my life as a mother with a sick kid.

Petrea Burchard said...

I don't have much to say on this. I am not a parent, and have not had to face these questions. But I grew up with an autistic friend who is still my friend. If we discount these people we are missing out.

Ms M said...

Very well said, very moving. Support systems are vital -- every one of us will be dependent at some point in our lives.

Star said...

Beautifully said, thanks, Margaret. I'm going to share it with my ESL class because it's an issue in Italy, too.

Anonymous said...

I like your thoughtful article, Margaret. I feel ya.

Desiree said...

This is pitch perfect. Thanks to your daughter.

cindie geddes said...

Thanks for sharing the perfection of your words and the perfection of your daughter, because she really is just perfectly herself, as are you, as are we all!

Country Girl said...

Your post has been most thought provoking. My youngest two children are adopted and were drug affected at birth. This has resulted in learning disabilities to different degrees for both of them. I used to feel sorry for their birth mothers because of their addictions but do not anymore. Because of their poor choices these children have problems. Difference is between that and vaccines is, they aren't raising these children. It is what it is and I thank God for them, but the reality is their birth mothers' poor choices caused them problems. All choices need to be taken seriously and bathed in prayer.

Lori Elliott Webster said...

Very powerful and thought provoking, Margaret.

Colleen Bates said...

Beautifully written, Margaret. And what an insightful daughter you have.

Melissa Yuan-Innes said...

Vaccines do not cause autism. These claims are based on faulty evidence. I'm an emergency doctor, and I vaccinate my children. Peace.