Wednesday, March 07, 2007

Normalizing disabilities: is it the right thing to do?

A couple of months ago, when the doctor sat and reviewed my daughter's test results, it was hard to hear and understand her over the roar in my ears and buzzing in my head. She kept talking about each test, how my daughter did during the tests, and the results the tests showed. She tried to explain to me the science behind each test. When she finished talking, she waited expectantly.

I remained silent, other than to say, "Okay, okay...ummm okay..."

She asked if I understood what she had told me, and the truth was, not one word.

I wanted those tests to be decisive, definitive. I wanted them to have a Yes or No answer, like a pregnancy test.

I ought to have known, though, with Patience---who has never been anything close to definitive---it wouldn't be straightforward and clear.

Even my pregnancy test with her wasn't definitive or decisive. I spent weeks moving from "not really pregnant" to "maybe a little pregnant" then to "sort of pregnant" and finally "it's a miracle...you're pregnant." My five doctors said they'd never seen a live, healthy birth that started from that low.

Her birth was no straightforward entry into the world, nor were her early months. We struggled to convince our doctors that something was wrong, and once we finally did, it was a long journey to identify what was wrong, and fix it.

And that's just physically.

Patience marches to the beat of her own drummer. She is by no means the child anyone expects. She embodies few, if any, traits that people look for and admire in children. She's not friendly or chipper. She shoots "hairy-eyeballs" (funny looks) regularly, is slow-to-warm, and her brain blazes at about 220 watts, blinding next to the 60 watt bulb I think I, and most others, burn. There is not a leaf on a tree that can wiggle in the wind without her knowing about it. Imagine how overwhelming that must be, sometimes.

Patience is not an easy child, but she is a wonderful one. You'd be hard-pressed to find a sweeter and more loving child. In the same way her senses catch every element, her heart catches every emotion and nuance. Imagine how overwhelming that must be, sometimes.

Every person who earns her love and trust, who gets to be one of her people, is truly blessed. She will open her mind and heart to bring something amazing to you, if you let her.

If you accept her, as she is.

That's the hardest part of parenting a child like Patience. I see how she struggles already, and I know what the world holds. There is no easy or obvious or simple choice when it comes to her.

She can thrive in the right environment. And wither in the wrong. Despite knowing how stong and capable she is, I struggle between wanting her to be so hearty that she can adapt to any circumstance and understanding that she's more of a hothouse child. I know she will be fine, good enough...but I want it to be great for her. I see what it is like when she thrives, is in the right environment, and that's what makes it so hard to accept "okay" and "just making it."

Right now we have a great environment for her. I wish you could see her. She's so beautiful in her life just now. She's bold as brass, confident, finding her feet under her, and the rhythm of her life. She's charging into her next stages, and announcing them ahead of time.

On Monday she said to me, "Mom, you better stock up on food and new clothes! I feel very hungry and that means I'll be growing soon!"

The child who used to huddle and cringe before change, now sees it coming and embraces it. We're getting something right. She's getting a lot right. I have a fierce pride in her, of who and how she is. If she can remain this mighty through life, I think, she'll be fine.

I watch her sometimes and marvel, I'm her mom. And I shiver from the wonder of it. And from the fear: how do I not mess up someone this amazing? how do I support her through the things that will come, that will mess her up, to preserve this special flame inside her? She's so precious.

I imagine most parents feel similarly. I'm pretty sure we all gaze at our kids and think every little thing they do is magic. Half the time I'm shaking my head and disciplining, I'm secretly smiling and feeling a little, I don't know, impressed I guess.

So with such unconditional love, you might understand what happened next, when the doctor pressed me for a response, and started talking about how to treat this situation.

I blanched.

I froze.

After initially feeling so relieved that the doctor validated my concerns and took us seriously, once we had a sort of prognosis of a possible problem, possibly physiological, possibly developmental...not really sure, but treatment is the same, either way...after getting all of this in order, I ironically, fiercely, resisted.

I wanted the world to do it differently. Accept her, as she is. Don't make her change.

Where did this feeling come from? I'm the one who was worried about what I saw, I was the one who pushed to test, I was the one who wanted it fixed.

Only after I got all I wanted did I truly understand that what I really wanted was to hear that my sweet precious baby didn't need to change a thing. That's the yes/no answer I sought.

When we began the recommended course of action, the successes were bittersweet to me. I knew she needed to do this, needed to change, but I mourned the loss of her own unique approach and, yes, talent...her own way of doing things.

It was nearly offensive to me to hear what I thought of as a talent referred to as a problem that needed correcting. No matter how much that talent had worried me and was a factor in why we saw the doctor in the first place.

I hadn't understood how much I didn't want to strip away that aspect of her and replace it with the “right way.” I hadn't understood how much I wanted “right” and Her Way to co-exist.

And suddenly I understood some parents who resist treatment. I understood how some parents do not perceive specific situations in their children as a problem that needs fixing. For example, I understood parents who refused cochlear implants for their deaf children.

There is a beauty to each of us entering the world in our own way, with our own uniqueness. If you believe in a higher power, as I do, then you also believe there is an intelligent design to this, a purpose. This doesn't mean we sit frozen, never striving for improvement, never trying for new ways of achieving more, being and doing better than we did last week. It doesn't mean by any stretch that we sit passively, accepting.

It does mean, I think, that we need to quit measuring against some arbitrary ideal, some concept of human perfection, and instead each measure only against him or herself.

Not every person who drinks in an alcoholic. Not every person who eats overeats. I think these situations use a pretty fair stick for measurement for determining a problem:


seriously and carefully ask yourself if it adversely affects the way you function


Perhaps I cannot imagine never hearing, and consider it a crucial sense for me. If I lost it, I’d be devastated, and if I had a chance to recover my hearing, I’d grab it with both hands. But can I extend that same sense of importance to another person? Can I declare their state a “problem” that they ought to “fix?”

It seems wrong…I don’t think I should do that.

Why, then, does it feel as if the expectation is that we all migrate to the median? Normalize ourselves, our children...meet in the middle?

Can we create space for all types, all sorts?

Having a disability is a "natural part of the human experience" (as expressed in the U.S. Developmental Disabilities Act). The sun shines equally on all the apples in the bowl, and it's time for the light of inclusion, opportunity, freedom, and dignity to shine equally on all people—including people with disabilities.

Throughout history, a variety of strategies have been used to solve the "problem" of disability. In ancient times, Grecian and Roman laws mandated the abandonment or death of babies with disabilities, to fulfill society's quest of achieving "human perfection." During the early part of the Christian era, the presence of disability was often thought to be the result of the person being sinful. Religious leaders tried to cure individuals with disabilities through prayer or healing practices, as well as by "beating the devil" out of the "afflicted."

Fast forward to the first half of the twentieth century, when the solution to cure "deviancy" was found in the "special training" available only in institutions for the "feebleminded." Hundreds of thousands of children and adults were abandoned in institutions, where segregation, isolation, abuse of all kinds, and death were commonplace.

...

We may have changed the locations where people with disabilities spend their time, but today's social policies still reflect the attitude that the "problem" of disability is within the person. Thus, a continuum of services exist: from treatments designed to "fix" or "help" those who (it's thought) may one day achieve some measure of an "able-bodied" standard, to programs which "protect" those who won't, and everything in between.

If—in hindsight—we know the conventional wisdom of the past was wrong, shouldn't we thoughtfully ponder today's conventional wisdom? Or will we continue to accept the status quo...

Instead of trying to "fix" people with disabilities, we need to ensure they have the tools they need for success (such as assistive technology devices for movement, speech, and other needs) and accommodations (physical, social, or other types of support), to enhance their successful inclusion and participation in the typical, ordinary environments most Americans take for granted. Isn't this also what we do for ourselves? We use tools, such as computers and other devices; seek and acquire the supports we need; and do whatever it takes to fulfill our dreams. Why should the lives of individuals who have been labeled with disabilities be any different?

Instead of thinking people with disabilities are incompetent—unable to learn, succeed, make decisions, and more—we need to presume competence. When we expect a person to learn, expect her to succeed, and expect her to make decisions about her life, she will! She may need assistive technology, supports, or accommodations to accomplish her goals, but so do we all.


Source: Kathie Snow, Disability is Natural, Disability is Natural

Once I got over my mental and emotional hump, I realized I wasn't fixing my problem daughter. I was providing her with tools that she needed in order to succeed.

Our experience set in my mind that it was really crucial to me to not identify a disability as something wrong with a person. I'd said it many times before, and I knew it, but now I really understood what I meant when I said, "It's not disabled, it's differently abled."

We do need to presume competence.

I no longer think that every difference that can be "fixed" should be "fixed." It really depends upon how you perceive it, and what you think is needed for competence and success. If your child is deaf, and you are deaf, perhaps you do not think hearing is necessary. I can understand that.

We all want our children to succeed, but I think part of mindful living is consciously reflecting on what they really need versus what we think they do based on a norm.

How each of us comes---as painful as it might be at times---is a truly valuable and beautiful contribution to the world.

I think this requires us to think of people within the concept of the continuum ( see the work of Jean Liedloff) rather than on a bell curve.

My life is
brilliant.

My life is brilliant
My love is
pure.
I saw an angel.
Of that I'm sure.

You're beautiful.
You're beautiful.
You're beautiful, it's
true.


(You're Beautiful by James Blunt)

copyright 2007 Julie Pippert

13 comments:

Thailand Gal said...

As I was reading along here, at first I had the impulse to be scared spitless. There is a trend to "normalize" (adjust to absolute conformity) the disabled, to patch them together not for their own quality of life but to render them capable of participating in the economy. That part scares the crap out of me.

Having a tool here or there to make navigating the world in our own way is a helpful thing. (Heck, I chose a whole *culture* to do that with... and it's not an easy process but we all need some mooring.)

As long as you remember this:

We all want our children to succeed, but I think part of mindful living is consciously reflecting on what they really need versus what we think they do based on a norm.

...you'll do just fine. :)


Peace,

~Chani

jen said...

we all need tools to survive in this world.

julie, you are such a wonderful mom. patience is so lucky to have you, just as you are to have her.

truly, truly.

Rachel Briggs said...

What a touching post. Yuor daughter is so lucky to have you as her Mum. Your unconditional love and acceptance is amazing.

I really admire your thoughts, and it will certainly make me reflect on my own.

kim said...

This post was beautiful.

Our little school adopted a program this year that develops the gifts and talents of all students. The premise is that all children have something to contribute and all strengths are valued. It is truly mind blowing to watch these kids find talents they never knew they had. It has also made teachers, parents, and students learn to appreciate all areas of intelligence. Some children who struggle academically have found that they have a gift for drama or cooking.

I think you are an amazing mom. Children who are valued already have the greatest tool to survive.

Mad Hatter said...

Julie, I can't even pretend to offer insights on this post. Have you read much of Andrea at A Garden of Nna Mmay? She is has worked through so many of these issues with heart and insight. Her style is forthright and at times bold as brass. Check her out. I think her last nominated Just Post would be a good place to start but follow some of the "Best of Beanie Baby" links on her sidebar as well.

Julie Pippert said...

Chani..the who, what? I'd be interested to learn more about that...will I have to blog in a very ranty way? I imagine so from what you said. I do keep that bit I wrote in mind, across the board, as much as possible. Thanks.

Jen, thank you thank you thank you. Then, as I think about it...I think we will both need that tatooed on our respective foreheads in the coming years, LOL.

Rachel, thanks! I look forward to any thoughts you decide to put on your blog. :)

Kim, that is awesome! Your school really does sound like it offers so much. I hope I am recalling correctly...you went through quite an unhappy ordeal with a private school, yes? I'm so glad this has worked out. I hope my children feel how valuable they are. I think they do. You know, when Patience says things like, "You have pictures of us because we are SO PRECIOUS to you!" it's kind of a clue, right? LOL

Mad, I have read Andrea...she is really brilliant.

You know, one point also is the difference between people who wear their differences on the inside versus the outside.

Kyla said...

My wee one has special needs, medically and developmentally. She is in various therapies and they have helped her immensely. I don't see her "disability" as such, though. She is so incredibly intelligent. She has just turned 2 and she knows all of her letter and can name/identify them. Her therapists say they've never seen a child pick up sign language like she has. I can see very definitely that she is indeed differently abled and since we've keyed in on that, she has really excelled. I don't think she needs to be "fixed" I just want her to continue to have the support and opportunity to shine like she was meant to, in her own way.

Mary-LUE said...

I have so little experience in this area that I don't think I can speak to it intelligently. I was very struck, however, by your internal struggle as you both pursue identifying your daughter's "problem" and resist her being labeled. I think that is just such a natural way to respond to your situation.

Em over at three times three just wrote about how she and her husband deal with her daughter's special needs. It sounds like each of them could represent the struggle inside of you. Em wants her to be tested, identified, given proper support services. Her husband resists the testing, not wanting her to be labeled.

Like others have said, I'm sure you and your husband will make excellent choices. When you take two thoughtful parents who are willing to be advocates for their children, it makes all the difference.

Gwen said...

I also have little personal experience with this, and I'm no help, because I freak out that my first grader isn't reading the newspaper yet (you know I have issues).

Blog Antagonist just wrote a post "Broken" that talked about this very thing, too.

Julie Pippert said...

Kyla, that is IT exactly! Thank you for putting it into such succinct and true words.

Mary, thanks for the good words. I will also go check out that blog.

Gwen, oh I think WAY too much about well, everything all the time. I'll see if I can motivate myself over to BA's spot. Thanks! :)

Bones said...

I'm going to have to email you about this one.

Queen of the Mayhem said...

You have no idea how much this post speaks to me. You need to read my post "The Saga Continues". I feel like I am a crossroads with Junior Mayhem, and I have NO idea where to go!

I am torn between needing him to conform, wondering if there is a greater problem, and wanting him to do what makes him happy!

I am with you, the ADD/ADHD over-medication crutch is so overused it is sad!

My mom is an Assistive Technologist for the parish in which I work. She provides accomadations everyday for kids who need them. You would be amazed at the stories she has to tell!

Marymurtz said...

My God, what an amazing and inspiring post. Seriously, one of the finest things I've ever read.