Monday, August 10, 2009

The Way Other People See Him

This past week we were on a short five-day vacation at the beach and experienced three extreme incidents of rudeness and ignorance toward Jordan. The first was when I "talked back" to people staring at Jordan and was told to "go to hell," as if I were in the wrong. Second, a man tried to give Jordan $5, I guess because he's a charity case. Third, a woman with a cross around her neck told Jordan, "BE HEALED." I told him:

You are perfect as you are. Nothing about you needs to be healed.

Most of the world sees him as someone to be gawked at, given charity, in need of healing. But this is how I see him:






Can anyone else see this??

Sunday, July 12, 2009

5 Years Ago Tonight

5 years ago tonight, my beautiful boy was born.

5 years ago tonight, the nurses gasped and the doctor grew distant and silent. Someone muttered, "There's something wrong with his legs." I shouted, "What's wrong with him?" but everyone had their backs to me.

5 years ago tonight, my husband looked at our baby for the first time and thought, "He's going to be a champion!"

5 years ago tonight, my husband held our baby and smiled for the cameras as the doctor told me: "Mental retardation, heart problems, and die before age 1."

5 years ago tonight, my mom would not leave the hospital until we decided on a name. I knew she didn't want him to die without a name. We named him Jordan.

5 years ago tonight, after all the parents, in-laws, and brothers were gone, after I was passed out from the morphine, my husband took our new baby into the hospital room and in the dark uncovered his legs, crying with worry but also trusting in God.

5 years ago tonight, our lives changed in the most profound way as we started on our journey with the most wonderful little boy.

HAPPY BIRTHDAY, JORDAN! We are privileged to have you in our lives and are so, so proud of you.

Wednesday, April 15, 2009

Field Trip

I saw something really interesting at the hospital yesterday. Jordan and I were there for an ortho visit, and I noticed a group of about 15 kids around kindergarten age who looked to be touring the hospital together. I knew they weren't patients because I saw them boarding a school bus to leave. I really do hope they were there visiting a kid from their class who was a patient there. However, my first thought was that they were on a field trip. "How nice that this is their field trip," I thought, "rather than their real lives."

Some kids are only visiting this life of hospital visits. Some kids go through life with runny noses, ear infections, and nothing more. These kids can visit a children's hospital as outsiders, be led around by a friendly hospital volunteer, maybe try on a doctor's white coat, listen through a stethoscope, maybe have a few laughs over trying on non-latex gloves and blowing them up like a balloon. They can learn about doctors and medicine the same as if they were visiting a museum.

Other kids are constant patients undergoing testing, surgeries, PT; being fitted for braces, wheelchairs, walkers, crutches. Some kids' lives have stopped altogether as they undergo chemotherapy. Strange how different life can be if your roll of the dice is to have a chronic medical condition. I would have loved to save Jordan from this life of hospital visits and therapies. But somehow we know something the field trippers don't know--how fragile life is and how thin the line is between them and us.

Saturday, March 07, 2009

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?

Monday, March 02, 2009

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?

Thursday, February 12, 2009

Disability Blog Carnival #53: Pot Luck

With the topic Pot Luck, I hoped to receive a lot of varied submissions. And I sure did! True to the topic, the submissions were all over the place! This was my first blog carnival, and it was so much fun putting it together! I hope you enjoy the offerings here.

(Mis)Perceptions and Labeling
To start it off, Andrea from Andrea’s Buzzing About talks about empathy in people with autism in You Just Don’t Get It. She writes, "If you cannot see that autistic people do indeed have empathy, then possibly you are not perceiving their distress, identifying the feelings being experienced, discerning probable causes, and being able to identify with such situations."

Laura at Touched By an Alien: Life as I Know It writes about the controversy of labeling in order to receive community resources. She rightly asks if services should be more geared toward the individual rather than based on a label.

Cheryl writes If You're a Tard and You Know It... about the book The Short Bus: A Journey Beyond Normal by Jonathan Mooney. She recommends this book and its great disability pride sentiments and from the sound of it, just because it's fun.

Accessibility: IKEA, Pubs, and Dick Cheney’s Wheelchair
Accessibility was on several people’s minds. Lauredhel of Hoyden About Town was at first impressed by IKEA’s accessibility—until she tried to leave the store!

Emma at Writings of a Wheelchair Princess tells us about recent complaints she has written about accessibility issues she’s encountered. “I will always be making complaints because how else will the world change?” she asks.

I also received a few thought-provoking posts about Dick Cheney’s use of a wheelchair at the presidential inauguration last month. Laura writes about Cheney’s Villainy: Nothing to Do with His Wheelchair. She writes: “We don’t need another villain in a wheelchair. A villain he may be, with shared responsibility for torture, repression, and all kinds of other crimes against humanity. But the wheelchair has nothing to do with it.”

Liz also covers this topic at Deconstructing Cheney's De-Inaugural Wheelchair. She writes: “How bitter, but how very expected, that the top levels of our own government, the most powerful men around, can't pull it together to obtain a halfway decent wheelchair and decent access, for one of their own. That exposes the deep, deep ignorance in our country about access for people with disabilities, and how far we have yet to go.”

Pity and Incompetence
At the blog Coral and Opal, there is a good commentary, Some Laughs Are Cheaper Than Others, about recent comedy skits about David Patterson, governor of New York. Even humorous skits should not “further the misconception that blindness is part of incompetence,” they write.

Speaking of demeaning views of people with disabilities, we must mention our old friend Jerry Lewis! The excellent blog The Trouble with Jerry has been cataloging Lewis’ use of pity to raise money for muscular dystrophy research. They recently posted the Academy of Motion Picture Arts and Sciences’ response to a letter opposing Lewis’ receiving a humanitarian award. Equating Lewis’ patronizing and pity-based approach to people with disabilities to "some scratches in the paint job” on a Lamborghini, the Academy just doesn’t get it and is sticking by its intention to give Lewis the award. Can’t say I’m surprised. . . .

Honoring “Genuine Inspirations”
I received a few posts on people with disabilities who have been true inspirations. I know, I know, but check out Romeo’s post on Tom, “the most famous autistic savant of all time,” who was a musical genius.

PhilosopherCrip talks about a “genuine inspiration”—I like that!—in a “heartfelt remembrance of an activist and a ‘force,’” his friend Annie who recently passed away at age 24. Annie’s philosophy of life was “Embrace diversity. Educate your community. Empower each other. Love life.” A little bit different than that Lamborghini with scratches on it above, huh?

And who isn't the biggest inspiration to us parents than our children? I received some great posts from mothers who blog about their children. Sally at Maggie World talks about her daughter’s communication abilities at The Sounds of Silence. Since getting her trach, her daughter communicates without her voice. Sally misses Maggie’s laugh and how she used to say “mama.” “We communicate fine without that one word, but it was always nice to hear,” she writes in his heartfelt post.

Ricki’s mom at Beneath the Wings gives us several thought-provoking posts about life with her daughter. On one occasion, she found running away to be the best response. It’s better on the nerves and the eardrums, she writes. She tells us about Ricki’s shaking off an annoying offer of help with something she could do perfectly well herself, thank you. On yet another occasion, Ricki’s mom found herself teaching a future special ed teacher a lesson about rights and respect . And last, she deals with teachers who let Ricki get away with murder. All in a day’s work for a mother, huh? :)

Heather from Learn-gasm provides a nicely organized list of the top 100 gender studies blogs. Anyone have a list of top 100 disability studies blogs?

A few posts discussed specific conditions and how they should or should not be treated. Dean at The Back Pain Blog talks about Herniated Discs and the Catch-22 of Rehabilitation. Rebuilding a person’s back isn’t easy, but Dean says it can be done.

And Ettina of Abnormaldiversity talks about side effects of behavioral treatments. She also reports on a case in Canada concerning a woman with Asperger’s. Ettina writes: “Much as many people would like it, being nasty and verbally abusive does not take away your human rights.”

Barbara at Barbara's Tchatzkahs tells us about how the topic of autoimmune diseases is pushed under the rug even though these disorders are so prevalent.

Alicia at Temporarily Disabled writes about warning signs her body was giving her when she was just in the fourth grade. This is her first entry in what should be a great blog. She tells us to stay tuned; I know I will! reports on a recent symposium at the University of Washington on the “Ashley treatment,” or "growth attenuation". No disability rights activists were present at the conference, which is quite disturbing.

Terri at About Partners in Policymaking writes about participating in New York State Partners in Policymaking (NYSPIP). She tells us that PIP covers “cutting-edge ideas and principles,” and the best part of the program is the relationships that are built there. PIP exists in most states, so look into it!

Keeping Hope Alive
I’ll end with some optimistic thoughts. At Life of John , John discusses keeping hope alive about finding that special someone through online dating. Good luck, John!

Frances tries to look on the bright side about the current financial crisis in her Independent Living Journal. She writes, “… perhaps now it's time to back the people who don't fit into the narrow stereotypes of traditional success, and see whether imagination and good-will can get us a bit further than recent economic theories have.” Here’s hoping!

And finally, Terri at Barriers, Bridges and Books shares the post Impossible? about her hopes that our new president can make some progress for people with disabilities.

Phew! All of these posts gave us a lot of food for thought, and I hope everyone had their fill (I know, pretty bad)! Thank you for all the submissions. I think this topic really worked out well—broad enough to be able to include tons of different topics and experience many different blogs. But wait, don’t go away too fast—anyone going to help me with the dishes???

Sunday, January 11, 2009

Announcing the Topic for Disability Blog Carnival #53: POT LUCK

The latest Disability Blog Carnival is up at DCB 52: Things That Are Therapeutic. There are a lot of great posts, so check it out!

I am hosting the next carnival, and I want to announce the topic: Pot Luck. Thanks, yanub (of Yet Another Never Updated Blog), for your feedback that a broader topic might invite more participants. And the crazy holiday season is over, so I’m sure you all have your blogging caps on! You can submit any kind of post you want for this one. Hopefully it'll open up a lot of great discussions, too!

Submit your posts for the broadest topic of all, Pot Luck, by February 9 for the February 12 carnival! I look forward to reading all your great posts and hosting the carnival—it’ll be my first one! :) I hope it'll be a good one. As yanub said, “When everyone brings their favorite dish, no one goes away hungry!”

Late addition:
A few people have indicated that they aren't sure what "pot luck" means. Maybe it's an American thing??? So, here's a definition from

pot⋅luck –noun
1. food or a meal that happens to be available without special preparation or purchase: to take potluck with a friend.
2. Also called potluck supper, potluck dinner, potluck lunch. a meal, esp. for a large group, to which participants bring various foods to be shared.
3. whatever is available or comes one's way: With fluctuating interest rates, homebuyers are learning to take potluck with the banks.

Basically, this carnival includes whatever you have, whatever you want to submit, anything goes!