It's Not Contagious

Today was a beautiful day, so we headed out to the playground. We went to Jordan's favorite one (and mine!), Everybody's Playground. It's an accessible playground--people with walkers, crutches, and wheelchairs can get right up onto it easily because of the wide ramps. We had Jordan's birthday party there last year and are thinking of doing it again this year.

The Stare Patrol, as we call it, is always out in full force there, and I try not to be bothered by it. But it is amazing the different reactions to Jordan--the ignorant, the rude, and the outright bizarre!

The parents my age don't stare that much or seem overly concerned with Jordan, but some of the kids stare and ask questions. I overheard two kids discussing Jordan's crutches. The crutches were lying on the ground near them, and they looked like they really wanted to touch them. The boy said to the girl, "They're fake," pointing to the crutches. He reached out slowly to try to touch them, probably thinking I wouldn't notice. When I glanced over, he said, "Uh, does he need these?" I said, "Yes." Then Jordan grabbed them and ran away, and the girl said, "They're real."

Then this was pretty cool, actually--Jordan kept using his crutches as "guns," so one boy in particular really wanted the other one to also use as a gun. My husband said to him, "They're not toys," but it was clear that they are to Jordan!

The older women, on the other hand, are the worst. First, the pity approach: I heard one grandmother say, as Jordan ran off using his crutches, "God bless him." Gee, thanks. God bless you and your grandchildren, too. Believe it or not, Jordan doesn't need any more blessing than anyone else.

This other older woman really got my ire up. Her grandson was a few years older than Jordan and kept following Jordan around. They were having fun playing together. Often kids do just come up to Jordan, and Jordan leads them around. He is especially commanding on the playground, and even more so on one like this with a fake pirate ship on it! He was leading this kid around saying they were looking for treasure, etc. But the grandmother was not happy about it. She told him a few times to be careful. Then she called him over to her and stage whispered, "I told you, go over there and play by yourself." He ran off but minutes later was playing with Jordan again. I saw him sitting on one side of the pirate ship, but when he saw Jordan, he got up and moved to sit next to him.

I told my husband I was going to say to that woman, "It's not contagious." I can understand her not wanting her grandson to be the one to knock over the "poor crippled boy." Ughhghg. But to ban him from playing with my son, when all the kid was doing was treating Jordan like any other kid? Strange, and if you think about it, truly terrible. Heartless? Selfish? Fearful? Is my beautiful, joyful boy someone to be feared? Or as that kid today realized, someone to conquer the playground with?

Thrown in the Rubbish Heap

I noticed earlier today that I had an anonymous (of course!) comment on one of my past posts saying something like, "Why do optimistic people like you write things like this? You should throw your baby in the rubbish heap."

My first instinct was to just delete this comment (and I did). This is MY blog, so this person doesn't get an equal forum with me. And I thought I should just try to forget it, not dwell on it, certainly not let such a thing take up a moment of my time or be seen on MY blog.

I certainly am trying not to let this comment hurt me. This person does not know me or my child (eg, anyone who knows me would truly get a belly laugh out of my being called optimistic). This person must not be a parent at all or could never dare to think or write something like that about someone else's child. But it is this attitude that I worry about for Jordan when he's out in the world by himself someday. He is just someone's "trash," not a person? Not a valuable part of this world just because he uses a device for walking?

That the person wrote "rubbish heap" makes me think this was probably a British person, so I think back to Gail Landsman's wonderful book Reconstructing Motherhood and Disability in the Age of "Perfect" Babies . She believes that one reason Americans stick with their children with disabilities rather than throwing them away like has been done in so many cultures throughout time is because of Americans' belief in the underdog, in the "against all odds," pull yourself up by your boostraps story. And nowhere is this idea more potent and prevalent than right in the area where I live, right outside of Philadelphia, PA, home of Rocky Balboa.

The reason I bring this up is because I've often struggled with the notion in disability studies that "hero or villain" is a harmful concept. I do agree, of course, that people with disabilities shouldn't be viewed in the villain role, as in the reaction to Dick Cheney's use of a wheelchair at Obama's inauguration. And I do agree that the "inspirational story of the week" wears a bit thin, too. But as a parent of a child with an impairment, I am exceedingly inspired by him every day. Is that okay because it's a "parent thing?" Do all parents feel this way?

Furthermore, is this inspirational thing what has kept us Americans from abandoning our disabled infants, keeping them, helping them to be the best they can be, just like we do for any other child? So is it a good thing to keep these inspirational stories coming?

Landsman also says in her book that mothers of children with disabilities—American women—often try to create a narrative to deal with their children's conditions, creating kind of a linear "movie" of their lives as a progression. I noticed that in myself, too, especially in the short movie I made of Jordan's life when he was 3 years old (see top left of this page for a link to it). Called "Jordan's Life So Far," I essentially plotted out his life as a linear progression from birth with clubfeet, dislocated knee, etc. through surgeries that "fixed" him to normalizing images of him doing everyday things that any kid does—playing the drums, painting, etc. I noticed shortly after I created it that this is what I did—presented his life in an "inspirational" way that is expected in this country. Is this so bad?

What I do think is bad is feeling the need to even do this, to make him not just normal but above normal. Would I idealize him anyway because he is my child? Or do I truly see him doing things I don't think I could do—be happy in the face of surgeries and not being "normal?" It's strange to me, too, as someone who never wanted to be "normal" or "average." I wanted to be different. I wanted to be extraordinary but never was. Now that he is different, am I trying to make him ABOVE everyone else, present him as EXTRAordinary?

But back to my original point about the anonymous comment on my blog. My first thought was that it's people like that who should be thrown in the "rubbish heap," not my beautiful boy. But wouldn't it be better to say that whether we are "normal," "disabled," "extraordiary," "impaired," or even a rude anonymous blog commenter, none of us should be thrown away, that all of us have value?