Disability Blog Carnival #65: Balance

Welcome to the Disability Blog Carnival on balance. I have been thinking a lot lately about how hard it is to balance knowing about issues related to my son's condition and his education with just treating him like a regular kid. It's easy to get wrapped up in what Kathie Snow at Disability is Natural calls "Disability World"--all the therapies, doctor visits, IEP meetings, etc. I recently saw Kathie speak at a 2-day conference, and as much as I loved what she had to say, I wondered if even attending the conference was being part of Disability World. I know I need to be knowledgeable, but I really need to devote my time to making sure my son has a "regular life" (whatever that might be). But then the more I think about creating a regular life, the less regular it becomes, in a vicious circle. Add this to the “regular” stuff of raising a child—who is intelligent, hilariously funny, creative, adaptable, adventurous, and outgoing—and it becomes hard to balance it all. Let’s see if any of the bloggers have solved the problem of finding balance.

Standing, Walking, and Dancing—It’s All About the Angles
At Wheelie Catholic, Ruth has posted Oh grasshopper! To achieve balance, you must get the right angle. She talks about literal balance, which means to her getting the angles right: “Achieving balance in my world usually comes down to angles. With limited grip and grasp, I often feel like a juggler in my kitchen. It's become second-nature to me to think of angles whenever I try to pick something up.”

Wheelchair Dancer has posted The Art of Balance: “Balance is such a literal kind of thing for me. I am aware of it every day -- in part because my personal life is one of such extremes that it is very unbalanced, and in part because, in my dance professional life, my ability to balance (or not) is crucial.” She describes balance while she is dancing, providing this eloquent description: “Frequently, I think we present or think about balance as a moment of held stillness, as a moment where you seem to stop motion -- perhaps against all odds.”

And TherExtras also discusses balance in the literal sense, as in standing, at Adaptations to the Environment. She talks about the benefits of using standers for kids who cannot stand without assistance. (TherExtras also invites us to participate in another blog carnival with the theme Childhood Expressions. Due... uh oh, today!! The carnival will be posted by April 25. If you can’t submit anything by then, at least check out the carnival when it posts!)

Figurative Balance
Spaz Girl at Butterfly Dreams writes about balance in literal and figurative ways at Balance, or Lack Thereof. She describes finding balance as “incredibly complex,” from walking down the hallways at school to balancing her work. And she ends with a hilarious last paragraph, reminding us of the importance of humor in balancing our lives. William Arthur Ward (known for numerous “inspirational sayings” such as “If you can imagine it, you can achieve it. If you can dream it, you can become it”) said about balance: “A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life.”

Haben at Haben's Travel Blog writes The Shadow of Stereotypes about an incident when she fell down and faced "magnificent drama" by onlookers. Taking on the thoughts of many of the bloggers, she finds that there are both figurative and literal ways of thinking about balance and disability. This "can also be seen as the general struggle of people with disabilities to balance an identity as independent and autonomous individuals, and individuals who need a little help now and then," she writes.

At A Writer in a Wheelchair, Emma writes in the post titled Balance: “One of the hardest things for me to balance however is the judgement of whether or not a thing is a disability thing or not. It's led to me being accused of being too ‘disability centric’ at times.” This reminds me of my attempts at balancing “disability things” with “regular things” in my family’s lives.

Cheryl at Finding My Way: Journey of an Uppity Intellectual Activist Crip says she did not plan to write for this carnival but was inspired by Emma’s post above. That is so great, one post inspiring another, all for this carnival! :) Ahem… anyway, Cheryl says at her post titled simply Balance that she has a visible disability and an invisible one, and she finds it difficult to balance how to deal with both of them and how to let other people know about her disabilities.

Balancing a Career, Activism, and Disability
brilliantmindbrokenbody posts Balancing career and disability (part 1), writing “Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t.” I look forward to part 2 on this important topic.

irrationalpoint at Modus dopens talks about the balancing act of being an activist and having a disability at Everything I ever needed to know about access activism, I learned in kindergarten. She is expected to always do more and more, and sometimes she must refuse for the very reason that she has a disability that causes fatigue.

Some Tips on Finding Balance
Finally, Terri at Barriers, Bridges and Books writes Balance... Yeah, It's a Problem, leaving us with some tips for finding balance. “Time for some reading, some writing and some socializing. . . . Because they just aren't as frivolous as they seem.”

Thank you for all the wonderful posts! I don’t think we have solved the problem of balance, but we have reflected on it in a unique way.

Next month's theme is Story at Barriers, Bridges and Books.

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?

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? :)

Miscellaneous
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!

Eminism.org 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???

Looking for STARING STORIES

I'm working on a paper about parents of children with disabilities, specifically parents’ reactions to STARING. I want to explore parents’ reactions, dealing with stares, how it makes them feel, how they react, if they intervene and if so, how, and so on.

If you have any stories to share, please email me at twxee@aol.com. I will not use your or your child's real names, of course!

Also please feel free to pass this around to anyone else you think can help!!

Capacities and Capabilities

A strange thing about Jordan—or maybe the least strange thing about him—is that whatever people think he isn’t capable of doing is what he wants to excel at. He was born with multiple orthopedic issues such as dislocated hips, a dislocated knee, club feet, and the ability to only move one of his toes (the big toe on his left foot). He walks with a walker or forearm crutches (we call them “ski poles), and he wears braces.

He is very smart and verbal and always has been. But what he wants to excel in are physical things. He throws himself around, he fights with swords, he does stunts on his walker. He is already planning his fifth birthday party—9 months away—as a wrestling party, more specifically, a “smackdown” party. It’s going to take me these 9 months to convince him to have a different theme!

Over the summer, we went to a birthday party for a girl in his class. It was at one of those “bouncetown” places. Right when we got there, the birthday girl’s mother came over to us and said, “There are some things over there that Jordan can play with!” pointing to the “soft play” area for infants. There were about four little foamy pillow-like things for babies to play with on the floor. “Yeah, sure,” I thought. “Just watch him.” He then went and climbed up a huge slide using only his arms, used a rope to climb up another one of the bouncy things, and truly kept up with all the other kids.

Recently when we were going through a lot of stressful things with both my husband’s and my family, it was affecting Jordan at school. He “kept to himself” in the classroom, the teacher told us. But still, out on the playground, he was the usual leader, getting his classmates to trail after him while playing “cops,” and “arresting” nearly every kid on the playground.

Last week they had a bike-a-thon at his school to benefit St. Jude’s. We brought his arm-powered Amtryke in for him to use. He needed help getting around the track, but he told us he “won” the bike-a-thon. I don't want him to be deluded about his physical skills, but I do want his confidence to last.

“I’m wiggling my toe!” he said to me the other day. That was his first acknowledgement about the movement in his toes. But the interesting thing—he didn’t say, “I can’t move nine of my toes.” It was that he can move one of them. The old clichés apply—he’s teaching me more than I’m teaching him. How am I supposed to reconcile not liking it when people say that he is “inspirational” with my own feelings that he does inspire me? He does reveal things to me every day. I feel like I'm not doing any of this; I'm just along for the ride, his loyal follower.

Baby Feet

Baby feet. When you think of them, you think of something beautiful and amazing—tiny yet somehow strong, envisioning all the places that newborn baby might walk and all the things he might do in his life. A new beginning with new, soft, beautiful, adorable feet to use on the journey. You just want to kiss those cute wittle toes.

It all starts with the baby shower. The gift tags, gift bags, greeting cards—so many of them have pictures of tiny baby footprints on them. The mother-to-be might get a kit to press the baby’s feet into clay to make a keepsake of the footprints. Special frames are used in anticipation of the big event—the baby’s birth and the footprints, which can be framed for posterity or put into an album. 10 perfect fingers and 10 perfect toes. These frames often come with little poems:

Two little feet, ten little toes,
Leave their impressions today.
Soon they will wear two little shoes,
And be running and jumping at play.
Two little feet, too little time,
Before they are walking to school,
Kicking a rock, or skipping a rope,
Wading a puddle or jumping a pool.
Two little feet, one little child,
Will soon go their own way,
But footprints in my mind recall,
They stood here yesterday

Or short and simple:

Little hands, little feet
Pure and precious, and Oh So Sweet!

A baby makes footprints in our hearts
that never dim or fade.

Where ere a baby's little footprints are found,
There is precious and hallowed ground.

The pitter patter of little baby feet
is music to the ears and ever so sweet!

In parenting magazines, it seems that every single baby and toddler is shoeless and sockless. I did a little study of it recently, and it’s hard to turn 5 pages without seeing some baby feet! No one wants to cover up those precious little toes!

It was into this world that my son, Jordan, was born, a baby with clubfeet along with a dislocated knee and dislocated hips. It was hard to look at his little footprints on the piece of paper. The doctors immediately started saying how he “wouldn’t be much of a walker,” and they began casting his feet when he was 9 days old. He had two surgeries on each foot and one on his knee, all in the first 15 months of his life. Plus, physical therapy, braces, walkers, crutches. Instead of cute little socks or letting him go barefoot, my baby was in casts for almost the first year of his life, and after that, braces almost 24 hours a day, including the brace with a metal bar between the feet. When he was around 4, he had more casting done to align his feet again--with his condition, his feet keep trying to go back to how they were when he was born. They keep trying to adjust his feet until he stops growing, and then they will stay where they are when he's an adult.

When he was about 2 months old and all of this was so new to me, with so many doctors appointments and so many dire prognoses, one day we took a break and went to Babies R Us. We went into the nursing/changing room in the back. I loved that they had this little room set up for us. It was so comfortable, with sofas, a changing table, room to just sit back and relax. Feeling relaxed for the first time in a while, I looked up from feeding him for a minute, and right in front of us on the wall was a huge probably 5 foot by 8 foot poster, a close-up of baby feet! I couldn’t escape!

Many times seeing those photos of the cute baby feet--and even the feet of my friends' and relatives' kids, who always seem to go around barefoot--tore at my heart. Why was it so easy for everyone else? Why were these babies crawling and then walking, not using any devices, not using any braces, when they were still SUCH BABIES, while my son talked like a professor so early, gave us “lectures,” as he called them, at age 1½, knew all the words to book upon book of nursery rhymes before he was 2, started sounding out words at age 3?

Someday I'll jump through puddles,
Take a stroll or run a race.
Someday I'll walk across the street,
Or maybe walk in space,
Someday I'll scale a mountain,
Or I'll join a ballet corps.
Someday I'll walk a tightrope,
Or explore the ocean floor.
Someday these feet will do some things,
That only heaven knows,
But for today they're happy
Just to wiggle all their toes.

Some babies can’t wiggle their toes and will grow up never wiggling them. The only toe Jordan can move is his big toe on his left foot. He has no movement at all in his right foot. But he does jump through puddles—using a walker and braces. He does whatever he wants. He doesn’t know about the stress this has caused me, having him not fit into the “mold” of the “perfect baby” that is drummed into our heads. He is just himself—rough, tough, sensitive yet strong, hilarious, and “all boy.” I now look back at his baby footprints and see something different—the feet were so tiny and were not aligned perfectly, but they are the feet of MY little boy.

Just 2 weeks ago, he took his first steps without his walker or crutches. I was happy about it, but suddenly I realized that it didn’t mean as much to me as it once would have. I know now that the important thing is that he can get around independently, and whatever device he has to use to do that best is okay with me. The doctor is now talking about another surgery for Jordan's feet and knees. I am looking into nonsurgical options because I now wonder if all of this has been too much, trying to align things to make them LOOK good. But if they're working for him... It's a hard balance. I don't want there to be any damage to his knees or feet from walking the "wrong way," yet I don't want him to go through anymore surgeries if they're not totally necessary.

In the meantime, the doctor said that the braces with the bar between them really aren’t doing any good for him anymore. So for the first time in his life, he does not have something on his feet while he sleeps. I lie there next to him in bed and make sure his bare toes are touching my leg. They feel so cozy and soft, like they belong there. The beautiful, perfect toes of my little boy.

Words That Sting

Sticks and stones
May break my bones
But words will never hurt me.

For this Disability Blog Carnival on ADJECTIVES, I knew I wanted to write about adjectives like “handicapped,” “crippled,” and “lame.” But this didn’t all coalesce in my mind until I was at Target today. I was in line, and the cashier, who was an older woman, was flirting with this young kid who also worked there, “razzing” him about his earring. He was a very tall and lanky and kind of awkward. After he walked away, she turned to me and said, laughing, “They call him Cripple.”

Everything came to a screeching halt. My mouth fell open. I didn’t say anything; I was too shocked. As I left, I wished I would have said any number of things to her. Maybe about my son—he uses forearm crutches and braces to walk; would she have used that “affectionate term” if she saw my beautiful boy? Maybe I should have said, “What you just said equates to nigger, thank you.” I have never said nigger out loud until today, when I described this story to my husband. Some words hurt too bad.

Just like some black people may try to do when they use the “n word,” some people with disabilities use the word crip, attempting to take back the word’s power. The thinking may be, outwardly or maybe unconsciously, "I will be the one to use that hurtful word. Then I have the power, not them." Whether this works, I can’t say for sure. I just know I don’t like “nigger” or “cripple” being used by anyone.

Handicapped is another one. There is a story that the word originated from disabled “beggars,” with their “caps in hand” looking for a handout. I know this isn’t the true origin, but still, this word bothers me. We have a disabled placard for our car, and sometimes we say we’re looking for a “handicapped space.” “Disabled space” somehow doesn’t sound right. But “handicapped” does bother me. The same thing with special needs—whose needs aren’t special to them—and even disabled. Kathie Snow at Disability is Natural writes: “’Disabled’ is also not appropriate. Traffic reports often say, ‘disabled vehicle.”

Two words that are used frequently and carelessly, often by young kids, are retard and lame. I remember last graduation season, a kid named Soeren Palumbo gave this speech about kids using the word “retard” toward his sister. He said, “Your mockery… is nothing but another form of hate."

“Lame” is also thrown around like it doesn’t mean anything or like it’s funny. A few weeks ago, I noticed that when I sent emails on AOL, a signature was being added to all my messages without my knowing it. This signature line was The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now!

I wrote to AOL complaining that I did not appreciate being forced to use this word ever, but especially when sending emails to disability studies groups and groups of parents of kids with disabilities. A tech person sent me a link to disable the signatures but of course did not discuss the political and social ramifications of using the L word.

Now, my son is 4 years old, and the adjectives that hurt him so far are nowhere near as harsh as the ones that hurt me. He is shorter than average for his age, and he has told me that kids at school say he’s “little” and “too little.” I watched him recently climbing up a blow-up moonbounce at a birthday party, and the other kids shouted, “Go, little Jordan! Go, little Jordan!” He smiled, but I know how that word hurts him. To think of how he’ll feel when he hears these other “ableist” words—cripple, lame, handicapped—flung at him… well, I just can’t describe how much my heart will break.

The only thing I can try to do is to let him know the meanings of these words and why people might use them, from my limited conception of why this is. I don't think I will use that platitude about the sticks and stones. I think he is already too advanced to believe that. So far he gets “everyone is different.” That is a frequent conversation at our house. He came home from camp the other day and said two kids there use wheelchairs. He continued: “Some people use wheelchairs, some people use walkers, some people use ski poles—that’s me!—and some people walk without anything. Everyone is different.” I think I might try to get him to change that to unique.

If I knew then...

When my son was some orthopedic issues, I thought I knew what it meant because I had just spent the last 5 weeks of my pregnancy with a broken ankle. I was miserable and not a “good patient.” I complained constantly, my arms hurt from hoisting myself up, and I was just downright miserable. Maybe some of it was because I was 9 months pregnant and walking on one leg on crutches, but who knows how I would have been otherwise.

On top of what I already “knew,” the doctors had dire predictions for Jordan. The first one said he might have trisomy 18, meaning “mental retardation, heart problems, and die before age 1.” We took him to so many specialists those first few months. How scary is it to take your newborn to a neurosurgeon? They said he would never walk, and he would be incontinent. He had some kind of growth on his brain. The cyst on his nose might be brain tissue coming down through his nose, and any kind of little cold might lead to meningitis. It went on and on. Waking up a few days a week to take him to more appointments, only to hear more horrible things that were going to happen to him.

I recently edited a book that prepares people for taking a nursing exam. The author stresses that giving “false hope” is unethical. Nurses shouldn’t say, “Everything will be okay” when it might not be. But is it also unethical to give only worst-case scenarios? That seems to be all doctors give these days. I understand they want to protect themselves from malpractice suits. But would it be so bad to give a little hope once in a while? Anyway, can hope ever be "false?"

I wish just one doctor or other “professional” would have told me that yes, your child may have some medical issues, but above anything else, he’s a KID. The doctor visits, the surgeries, the physical therapy and evaluations become just things you have to do, and your child grows up anyway, despite everything. It really hit me one day when he was about 1 year old, a quiet moment sitting at the table with him eating French fries. And I realized this is normal. This is just our life. The regular, everyday moments had finally surpassed all the medical stuff we had to do. He was growing up despite what everyone said. He was just a regular kid, with likes and dislikes, things that scare him and things that make him laugh. The doctors never tell you that your child will learn the alphabet, make friends, love movies, sing songs, play the drums, love cutting things out of magazines, and think he's a pirate. To them he is only a medical diagnosis. If I had known then what I know now, the start to our journey wouldn’t have been so difficult and frightening.

“Handicapped”

When my son was born with a dislocated knee, dislocated hips, clubfeet, and missing the lower part of his spine, and they said he might never walk (might not even LIVE), I thought I knew what it meant. I had just spent the last 5 weeks of my pregnancy in a cast from my toes to my knee, after breaking my ankle when I was 8 months pregnant.

Anyone who has been 8 and 9 months pregnant knows how often you have to go to the bathroom. The first night, I had to sleep on the sofa downstairs, and with no access to a bathroom on the same floor, my dad brought over his portable toilet they use while camping. It was a Sunday night, so I had to wait until the next afternoon to get my leg casted. I couldn’t take any pain medications because I was pregnant, so I spent the night in agony on that sofa, getting up several times to use the portable toilet, which was sitting on one of our living room chairs.

After getting my cast on, I managed to crawl up the steps to our house backwards, but then I had to haul myself up into a desk chair with wheels on it. We called it the FDR’s wheelchair because of how old and rickety it looked. But other chairs were too high for me to hoist myself up into. So I had to use my arms and the non-broken leg—I couldn’t put any weight whatsoever on the broken ankle—to lift up this heavy body I wasn’t used to. My family wasn’t giving me any help, really. They wanted me to “keep active.” All I thought about was keeping the baby safe.

I had to convince them to let me have a wheelchair; they thought I should walk on crutches so I’d be more active. But after falling down stairs and breaking my ankle, I wasn’t very confident about using crutches. I had never used them before, and I thought being 8 months pregnant, after already falling once, it was not the time to learn.

This late in pregnancy, it’s hard to sleep anyway, and now they say you shouldn’t sleep on your back when you’re pregnant. So, I had to sit up in bed with my leg elevated. It was hard to sleep, too, with the number of bathroom trips I had to make. The first week, before I had my wheelchair, I had to walk down the hall in the middle of the night, about once an hour, on crutches, scared I was going to fall again. Then when I did have the wheelchair, it was hard to move myself from the bed into the chair because there wasn’t much room for it next to the bed. When I was in the chair, I would wheel down the hallway, and then because the wheelchair couldn’t fit in through the bathroom door, I had to stand up at the door on one leg, grab my crutches, and take a few uncertain steps on them before plopping down as gently as I could on the toilet (ie, not gently at all), worried with every movement that I’d do something to hurt the baby.

To get into the shower, I’d have to step over the edge of the tub and then shower on one leg, and I wasn’t comfortable doing that. Also, we never realized we could put a plastic bag over my cast. So, I took sponge baths. I sat on the toilet, put a few towels over my cast, and then bathed from the water in the yellow bucket that I’d gotten as a baby shower gift. (The bucket had been the “gift basket,” and inside were all kinds of cute baby bath things such as washcloths, baby lotions, and baby shampoos.) I’d wash my hair and then rinse it by leaning over the tub and pouring a pitcher of water over my head. I took my time with these sponge baths; it was one of the only times of day when I felt fresh, clean, and comfortable—and not afraid that I wasn’t going to fall down (mainly because I was already sitting down)!

During those 5 weeks, I rarely went out, mostly to doctor’s appointments. The first time my ob/gyn saw me with the cast, hobbling out of the bathroom on crutches, she looked shocked and shouted, “You can’t deliver a baby LIKE THAT, with THAT on your leg!!!”

The day I got the wheelchair, my dad insisted on taking me out to the movies. I really didn’t want to go, but he thought I needed to get out. What I remember most about it was hard it was to use the bathroom. It was hard to open the doors to get into the bathroom, and then when inside the stall, the handrails on the walls were very wobbly, and some were coming off the walls. And the floor was slippery when I tried to haul myself from the wheelchair onto the toilet, and of course I was terrified as usual that I would fall and hurt the baby.

Also, he dropped me off at the door to park the car, and when I went to the ticket booth to buy our tickets, the man working there took a while to notice I was there because I was so low down in the wheelchair. Then he barely looked at me. It might not have been me, but that was how I perceived it, that he was “looking down on me” because I was in a wheelchair. And doors were slammed in my face whenever we went to the movies. No one would stand there and hold a door for me.

I was due to get the cast off 1 week before having the baby. Of course, he came a little early, and I still had the cast on when he was born. He was turned the wrong way, so I had to have a c-section. The mood in the delivery room was cheerful until he was born, and then it grew very quiet. Then I heard mutterings, “His legs… something is wrong with his legs….” After that, everyone was silent, and my husband went over as they cleaned him off, and all their backs were to me. “What’s wrong with him?” I yelled over and over. They seemed miles away from me but were only feet away. I tried to reach out to my baby, but my arms were pinned down. My legs were literally paralyzed from the epidural, and I couldn’t walk anyway with my leg in a cast. They let me glance at him for a split second, but of course not hold him, as they took my husband out and they stitched me up.

“What’s wrong with him?” I finally got to ask my husband.

“Just a little something with his legs. No big deal,” he said, as they pushed him out of the room. I later learned that while I was in there worried out of my mind, he was in the hallway holding our baby, Jordan, and showing him off to the grandparents. They took a lot of very smiley photos as I was alone in the recovery room, being told my baby probably had trisomy 18, meaning “mental retardation, heart problems, and die before age 1.” The doctor who said that then left me alone again, questions unanswered, with me on drugged out and shivering under a hot blanket.

They took Jordan away the next morning to a NICU about 40 miles away. Mike, my husband, came and stayed overnight with me every night that I was in the hospital, but he spent many hours of the day and into the late night there with Jordan in the NICU, reading him books. And holding him and feeding him, two things I was supposed to be doing. Not him. Me. But there I was worthless and helpless in a hospital bed 40 miles away while doctors ran countless tests on my baby and nurses took care of his most basic needs.

It still kills me to look at the first photos of him, taken when he was in the NICU. He had scratches all over his face because no one cut his nails, and he didn't have those little mittens to wear. And he was wearing a donated outfit because my husband didn't think to bring him anything to wear. I know he was busy running back and forth between hospitals. But instead of Jordan's wearing the adorable Winnie the Pooh outfit I had picked out for him to wear as a newborn, he was wearing a donated outfit, with scratches on his face, no mommy to take care of him.

One of the major things you’re supposed to do after a c-section is stand up on the second day after surgery. For me, they had two young physical therapists come in to help me. The pain was excruciating—but not as bad as broken ankle had been—as I stood up and these two young girls stared at me, dumbfounded. “That’s it,” I said, “I’m sitting down now.” Later that day they sent in a very energetic, muscular male PT, I guess who was supposed to motivate me. He didn’t. On maybe the third day, they let me take an actual shower, the first one I’d had in 5 weeks. They put a plastic thing over my leg, the nurse left me alone, and I just let the water rain down over me for nearly 45 minutes. And with less fear of falling now that I’d had the baby, I did start to walk on the crutches a little bit, and I remember so clearly that moment as I walked into the shower for the first time: I thought, this is what my baby is going to experience his whole life—this helplessness, pain, fear, sorrow, and anger. This is what being “handicapped” is all about, and this is what his whole life is going to be like!

Little did I know the powerful person my baby was. I was terrified to go into the NICU, but seeing him there for the first time, he looked so healthy lying next to the tiny babies in incubators. He had great coloring, was active and alert, and I could have sworn, he stared into my eyes already, responded to my voice, and knew who I was. And he looked like he knew something. At 2 weeks, old, he smiled during his first bath in the kitchen sink. At 6 weeks old, his Gymboree teacher told me, “He has an old soul.” At 3 months old, he laughed his first big laugh during an appointment at Shriners. He had five surgeries before he was 18 months old, and all of them were much harder for me than for him.

When he was just under 2 years old, he was a ringbearer in his grandfather’s wedding. When they asked us if he could be in the wedding, he couldn’t even walk yet. On the day of the wedding, he had been walking with his walker for only about 2 months. The other ringbearer, who was about Jordan’s age, had no trouble walking, but he cried his eyes out and had to be carried down the aisle by his mommy. Then Jordan confidently walked into the church all alone, looking like a little gentleman in his tuxedo, and shouted, “Hello, everybody!” He dashed down the aisle, taking his job very seriously, and sat in the front row of the church and “read” the church bulletin. The other kid continued to sob during the entire ceremony.

And now, at 3 years old, Jordan is the most joyful person I have ever known. He has what the veterinarian said of our Labrador retriever a few years back: joie de vivre. As he runs around with his walker, uses his forearm crutches as swords, throws himself on the floor when fighting imaginary bad guys, dances like crazy and throws his head around, “rocks out” with a guitar and sings at the top of his lungs, being “handicapped” is not something he considers or has any understanding of—and the way it looks now, he never will.

Mobility

When I was in middle school, I remember there was this girl on the school bus I took who used forearm crutches to walk. I remember staring at her through the window of the bus as she walked to get onto the bus. She had to cross over one lane of traffic to get to the bus. It took her a long time, and it didn't look easy for her. She always seemed happy, though. That was one thing I couldn't understand then, how she could be happy when she had to walk like that. She was very friendly and would talk to people, but most people would just ignore her. Including me. I feel so guilty and terrible now as I remember that I would think to myself, "Please don't let her talk to me." Because then I'd be obligated to talk to her, and someone might see me talking to her. I didn't have many friends. I wasn't popular at all. Yet I didn't want to be seen talking to the girl who walked like that.

Then what, 20 years later, first, I had a miscarriage in May of 2002. That happened the same week I got fired from my job. Fired, then found out I was pregnant a few days later, then went to the doctor a few days after that, who sent me right in for an ultrasound, and there on the screen: a sac with nothing in it. Or nothing we could see. Nothing every bled out, and I had to have it surgically removed. I spent the whole summer at home, jobless, mourning. Luckily, we had just gotten our dog, Kahlua, a chocolate Lab, in January of that year. She was with me all the time. When I laid in bed depressed, she'd come up and lie back to back with me. It was better than a person, really, because I didn't have to say a word.

The next year, in November of 2003, I got pregnant again. Within weeks, I started bleeding. It was heavy period-like bleeding that lasted 6 weeks straight. It was the most frightening thing to me in the world at the time--going to the bathroom so many times a day, never knowing what I'd find.

I went on bedrest for 3 weeks, but I continued to bleed. The doctor said what will happen will happen, and bedrest really wasn't going to do anything. I went back to work, still bleeding. It stopped on January 18, 2004. I don't usually remember dates too well, but that one I do. The baby was fine. But it wasn't until March that I bought one thing for the baby. I was 5 months' pregnant by that time, and my husband and I went to Target and got a few little outfits and stuff. I remember these little light green onesies we bought. They had palm trees on them and giraffes. They were sooo cute. I let myself trust that the baby was going to be okay. Finally, I let myself believe it.

After Target, we went out to eat that night, to celebrate. I saw an ex-coworker there. She was from the job I got fired from. So that brought all of that back. We liked the restaurant--they had freshly baked, hot chocolate chip cookies with cold milk for dessert! So a few weeks later, we went back to the same restaurant with some friends. I remember waiting for our table and seeing this group of two couples with their kids. One of the kids used those forearm crutches. He was about 5 years old. I remember looking at the parents, noticing how they talked so nonchalantly to each other, laughing, chatting with each other, barely watching their son as he basically ran around on those crutches. I wondered how they could be so casual about it, seemingly not even thinking about how their son was getting around.

Now when people stare at my 2-year-old son when he is using a walker, I am the one acting casual. I am the one who thinks it's great that he can get around on his own. I am not the one staring, wondering how those parents do it. I am not the kid staring at another kid using crutches. He's my kid now. And I can see why that little girl on the school bus was so happy, why those parents were laughing and nonchalant. They probably went through a lot to get to that point, and they were glad for the walking, even if it was with a "device." The independence that that walker gives my son and those crutches gave those other kids is what is important--not that they do it in the way people are used to seeing. So when people stare at my son now, I have to try to remember that I was once one of the starers, not understanding what it's like, not understanding that it's a triumph and progress rather than something to be scared of.