Saturday, September 06, 2008

A Quiet Rant

I'm thinking about the years I spent as a consultant. When I was first hired as a behaviour therapist by Behaviour Management Services, I was quite comfortable in my role when going into workshops, group homes and classrooms. After having graduated from the University of Victoria, I knew I wanted to provide behavioural consultation but I didn't feel like I had anything more than book learnin' to offer. So I spent a few years working direct care, first in an institution, then in a classroom, then in a day programme, finally in a group home. It was a wonderful experience and got me sort of addicted to providing direct service. (Though I do this much less, I still, regularly through the year teach classes to people with disabilities and provide direct clinical consultation.)

What I was less comfortable with was my work with families. The first time I walked into a family home to meet with a mother struggling to provide support to a child with a disability who got perfect 10's, though 7 from the Russian judge, in temper tantrumming, I felt inadequate. Who was I to give any parent advice? But I bucked up and did my job, listened to parental concerns, looked at the environment, made recommendations, did follow ups, wrote reports. I got kind of good at it. And. AND. I came to really respect the parents I met, the struggles they had and the lives they lived.

The biggest eye openner to me was the fact that these parents lived, for the most part, typical lives. The child with a disability added a new dimension to their lives, changed the way they viewed the world, made them organize themselves differently, enriched their lives in some ways, impoverished their lives in others. Kind of like what happens when a child, of any type, enters your life. After awhile, the sheer ordinariness of their lives impressed me, even though they developed extraordinary skill. Moms could ready three kids in the morning, do battle with a transportation company, send information for a teacher to not read, get out the door and to work on time. Amazing.

Every parent I met, even those with kids who's screaming had me rethinking the edict forbidding the use of duct tape in behavioural programming, loved their kids. Some were beaten down by systems and supports, by schools and specialists. Some coped well. Some coped poorly. Some cried more than they laughed. Some relished in conflict. They were as varied as they were typical.

All this is to say that I've been horrified at the conversations I have heard this week, often from people in the service of those with disabilites, about Governor Palin and her run for Vice Presidency. Now being a Canadian, I admit to looking at Republicans with a kind of morbid curiosity - people really believe those things? But, the comments made suggesting that she shouldn't run because she has a child with Down Syndrome. That 'these' children require more care, more sacrifice ... that good mother's wouldn't do that to their children.


I say, "What!?!"

This is not what I've seen when meeting parents. This is not the general impression that I've gotten. Who the hell has any right to decide what Governor Palin and her family takes on ... besides Governor Palin and her family? Are people suggesting that if a woman wants a career she shouldn't be a mom? Or just not a mom to a kid with a disability.



These are dangerous waters to be wading into. Suggesting that children with disabilities take opportunities away, reduce your ability to dream big, encumber your asperations. Dangerous, dangerous waters.

I say this.

Not your child.

Not your family.

Not your decision.

Shut up.


Amy said...

I am not a Sarah Palin fan, but those are the comments that have me seething! I have no doubt that she not only can manage the demands of her chosen career, she can probably juggle her commitments better than any man out there. Implying that she can't, or even worse, that she shouldn't, is insulting to women, and more specifically, to moms of kids with disabilities. Thanks for adding your perspective on this!

liz said...
This comment has been removed by the author.
liz said...

Sorry, deleted comment due to typo.

What I was gonna say is Sarah Palin's children are absolutely NOT a reason for not wanting her to be a VP? So she's got a child with a disability and one of her children is a pregnant teenager? Not a reason to vote against her.

Cutting state support for children with disabilities and for pregnant teenagers IS.

Cynthia said...

Thank You! No matter what the political philosophy, a parent should have that choice about how to raise their own family! I have chosen to stay home with my kids, my older child has Down syndrome. I do not look down at anyone who chooses to work. Most parents have to work, and make good choices for their children. I have seen the comments too, saying Palin is a terrible parent because she works a demanding job, and now has chosen to bring a child with "special needs" into the world.

I have never seen so much about the "ethic"s of bringing a child into the world who will have challenges! As if death is better than being less than "perfect". Wow.... wow.

We all find our own answers, our own ways that work. Anyone who thinks children of working parents aren't loved as much or as well cared for need to think again and as you said, leave them alone! Palin's son Trig is well loved by all his family- very clearly! It feels like we've gone back in time 70 years!

Definitely, I get the idea that people think a child with special needs is supposed to ruin your life. Huh? No way! Everyone I know will tell you their life is so much better, richer with their child in it and wouldn't change a thing.

They are bringing out all of the "mommy wars" on this one!

deb said...

*Standing and Applauding*

Well said, Dave.


Kathy said...

yay for Dave! Keep it coming, man! Maybe what those naysayers really want is to not be offended by having to watch Trig grow up.

Suelle said...

Oh man, I'm the only voice of dissent. Maybe I'm playing the victim, I don't know. But having a child with a disability has made my life more difficult. I am not the same person at work that I was before--I don't have the energy to be the best worker because I'm using that energy with my son. I don't care about work anymore like I used to. It's just a job. It makes me money. And I feel like that's OK.
I'm not a fan of any of Sarah Palin's policies either, which may be coloring my reactions. But I just feel like she's going to be used against me, like "Why can't you do such & such, Sarah Palin can do it?!?" I'm a little tired of hearing about Super Women, when I feel so very much like Inadequate Woman!

Jessica said...

Are daddies chopped liver? I would think this whole line of reasoning against Sarah Palin is insulting to her husband as well.

Do you think that some of these nasty comments may be from that percentage of people who choose to terminate a baby with DS precisely because of these types of fears: it will ruin opportunities, dreams, careers, marriages, etc. It must be hard then to see that it is not true in so bright a spotlight.

ntmjbmom said...

There is a total double standard when it comes to men/women.

Although I realize it's past history, not one word about Biden being sworn into public office, at the hospital bedside of his two injured children, who had just lost their sibling and mother.

That is no reflection on him, his parenting, or his status as father.

But if a mother were to do it (or far less, just entering the political race after having a baby), she would be deemed a bad parent and it would be "irresponsible".

I think, no matter how much we strive for "equality", we are still a way off.


rickismom said...

When I first heard the comment "How will she do it?" I answered, "She'll probably hire a nanny..."
In the end I heard that her husband is a stay-at-home- father right now.
But this intrusion is ridiculous. I suspect that people who are not in favor of her world-view are using any excuse they can to discredit her.
Some parents of special children may not have the support and money and whatever needed to continue "as is", as suelle points out. I know that in my community, many new parents of children with DownS have taken a 2 year break from work till they are over the first hurdles. Others cut back on their hours... and others send their children to child care.AND WHATEVER THEY DO TO COPE as LONG as it is NOT HURTING their child is OK. Suelle, you have no reason to feel bad. I always say (and if you don't believe in G-d, sorry...):
"G-d doesn't expect you to spend every minute with this kid and make an Einstein from him. But you can't just throw him to the winds, either. You just have to make a normal human effort to juggle your various responsibilities as best you can. If G-d didn't make you supperman, He won't expect you to be one..."
Obviously, someone in a high pressure job will have to choose a bit between family and job. We see that in fathers as well. So if she accepted the nomination, I think people can assume that she has decided what she wants to do now, and how.
In line with liz's comment, without choosing sides, I believe that she has to be graded on her views and positions. Those who think she is a "saint" because she had a kid with DS upset me just as much (OK, 95% as much) as those who claim she is not fitting because of the child with DS. Pallin is running for VP, not her son......(nor her teenage daughter, either.)

Good post Dave!

John R. said...

Children with disabilities allow for, I would dare say, more opportunities for growth, exploration and love! That is if parents and families embrace the fact that kids with disabilties may have some extra stuff that they will need but are ultimately KIDS...with all the same kid needs we all once had....

Sarah Palin is a fine mother I would bet....I am sure she can do whatever job she needs to do despite all of her kids with disabilities or not, down syndrome or pregnancy, son in a war zone and a pre-pubescent handful...whatever child-rearing possibility there is..

I just am disgusted at her comments about the war being waged on Iraq and Afghanistan being "holy wars". That is a mother who scares me....regardless of her abilities in raising her kids, she is a terrifying prospect for national leader....if we want to get religious, please pray for her loss in the election....

ntmjbmom said...

I also find the "she is such a hero to have given birth to a child with Down Syndrome" attitude very repugnant.
Unfortunately, statistically speaking it's so unusual as to be extraordinary..and that is sad, no matter how you feel about abortion.

But, really she is a woman that had a BABY! The fact that over 90% of other people would have aborted, makes her unusual..but certainly no folk hero.


Terri said...


Kei said...

Thank you.

yanub said...

While I don't think Trig necessarily makes any difference as to whether or not Palin is capable of holding office, I do think that it is perfectly fine to question her family priorities. She is being pushed as being a fine example of family values. If she wants to be the family values poster child, she doesn't get to object to people scrutinizing her family and her role as mother. Personally, as a mother with of a now-grown child with disabilities, I don't see how she can be there for the midnight runs to the ER and the long days sitting next the bed. But maybe she just won't do those things, maybe that will be all her husband's responsibility and she will do none of it. And if you think that I am unfairly judging her based on gender, just ask me about my no-good no-show poor-excuse-for-a-father ex. You know, he's perfectly good at his job, too. He's still an ass.

Shan said...

I must say I agree with yanub. I have heard bits of this debate and, although I sort of clap my hands over my ears and chant, "la la la la, I'm not listening" whenever I see or hear anything about the American election (I reached saturation a long time ago and I'm dying for them to just VOTE ALREADY) I can't help but think I would respect her more if she stayed with her family, having just had a baby. Any baby. You have to have pretty long nipples to breastfeed your infant from the freaking White House. If that child was two, or even one, I'd feel differently.

"Rah, rah, family values, rah rah, tradition, rah rah, now I'm going to shake up some Enfelac, hand my newborn off to his sister, lace my post-partum tummy into a power suit and save America from Democrats and abortionists!"

And FWIW, I'm not "afraid I'm going to be offended by having to watch Trig grow up", either.

Sorry...I'll shut up now.

Glee said...

All this aside - and I too am trying to ignore this whole circus of electioneering that seems to go on forever and is boring me to tears here in Australia - I am surprised by how many people, mostly parents who still continue to refer to their children with disabilities as "special needs children".

As a crip myself My needs in relation to my disability are not "special" at all. They are just "different". The whole "special" description makes me want to throw up!!

While you continue to use this terminology you are setting your child (and me) apart from everyone else.

When you use the term "special needs" all the abloids hear is; expensive, hard work, scary, ugly, time consuming, etc.

So as a crip I beg you all to please stop using this "special" word. It sucks and it offends the hell out of me as I know your children will always been seen differently while you continue.


Jenny said...

I agree with two of the other commentators. It's not about the child having Down Syndrome, it's about the child being so young. I have a 7 month old myself, and I couldn't imagine having to travel so much with him, or being away from him for long periods of time! I'm not thrilled about Obama having younger kids (not sure how old they actually are), but they are way more independent than a 5 month old is. But who knows... if she does get elected with McCain, maybe it'll bring positive changes to the disability community in regards to those with Down Syndrome. If nothing else, we'd get to watch that baby grow up for 4 years.

Just my thoughts.

aoc gold said...

The Star

Twinkle, twinkle, little star!

How I wonder what you are,

Up above the world so high,

Like a diamond in the sky.


When the blazing sun is gone,

When he nothing shines upon,

Then you show your little light,

Twinkle, twinkle all the night.

The dark blue sky you keep

And often thro' my curtains peep,

For you never shut your eye

Till the sun is in the sky.


'Tis your bright and tiny spark

Lights the traveler in the dark;

Though I know not what you are

Twinkle, twinkle, little star!

-----by aoc power leveling

Nicole said...

I have to laugh at Shan's "Just vote already" comment. I am SOOO with you!

As far as Palin goes....have I told you lately that Tarenne is without a doubt our easiest child? And she gets about 90% of her needs met by either Joe or I...I would say that's pretty good with 3 sisters. :)

Having a child who has T21 in no way will affect how she runs office. Now, having any child would definitely affect the way that I personally would do any job full time...exactly why I choose to be at home. But then that's the beauty of choice...I make my own and don't feel the need to make others for them.

I find it interesting that her being chosen has started the flip flopping of many who are judgemental. Conservatives and liberals alike have started rethinking their rigid views. That in itself is a good thing.

The Sheepcat said...

Dave, hello again!

I've been reading here for a while, thanks to our mutual friend Belinda.

You will appreciate felix hominum's reflections on the reaction to Trig Palin, I bet.

As for Palin's alleged cutting of support to children with disabilities and pregnant teens, as mentioned by Liz in comment #3, it's not true, according to the non-partisan Annenberg Institute at the the University of Pennsylvania.

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