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01 September 2008

Sarah Palin as Veep (Rant/Long) [More:]As a parent with a child with Down syndrome, I'm very interested to see how this upcoming election will play out. Choosing Sarah Palin who has a four month old child with Down syndrome was probably a mistake, but not because of what you might think.

One of the first things to look for is how she is handling this. It might be the case that she is the most with-it person on the planet and having a child with Down syndrome is taken completely in stride. After all, she's had 10 months or so to come to terms with it (assuming that she had the early screening done – very likely at her age). More likely, she is still in mourning in some way or another, and believe you me, no matter how well you put on that public face, it still affects you deep down. It took me a good couple of years to come to terms with things and it's still challenging in year five.

The second thing is to see who is actually taking care of Trig, because that's going to be one of the most important full-time and then some jobs that her family will have. If you have a child with a severe disability, one of the programs available to you is called Early Intervention. This is a state-provided program that allots necessary care to the child and training to the parents. This is a program that is provided in the home and is built to give make the family and the EI staff a team to help the child develop for the first three years of its life. Why three years? Because some pencil pushers determined that three years investment up-front is long-term cost effective. Helping a child develop early is more likely to keep them out of institutional care as an adult. Aside from the cost-efficiency aspect, there is a prize that comes along: if you work really hard those first three years, you will more likely have a child who grows up to be a valuable, productive, self-sufficient adult. This is especially important if Sarah ends up in the White House because Trig will have spent nearly 2/3 of his EI time while his mom is effectively unavailable. During the campaign, will Sarah be also learning about how to develop gross motor skills, what cognitive milestones are most important to shoot for, how to develop speech and fine motor skills? I suspect not. Let me contrast – during my daughter's first three years, Mrs. Plinth or I or both attended most of the EI sessions because we had to learn what to look for. In exasperation, I complained to the physical therapist that I was tired of having to think so much about PT – couldn't I just play with my daughter? She gently reminded me that all play is physical therapy, but knowing how to direct it and what to look for makes all the difference. After a long day shaking hands and waving to crowds and repeating sound bites, do you really believe that Sarah Palin will be also taking the time to get trained in developing centerline play, preventing turn-out in Trig's hips, knowing how to train him to drink from a straw? I don't.

The more likely scenario is that the rest of the family will be taking up the slack and/or they will be hiring help to make that happen. If they hire help, remember whenever you see Trig that he is incredibly lucky to have a family with resources to hire out the help, because most families sure as heck don't.

Another thing to look for is to see how often Trig gets used for political gain and how often the campaign hides behind him as well. For example, Trig can be used to push a pro-life stance, but be prepared for accusations of hating all kids with disabilities if the opposition disagrees. I'm not saying it will happen – I'd be pleased if something like that never happened because this campaign could be one of the best things that happened to Down syndrome awareness since some brainiacs in the 1970's re-discovered what Langdon Down knew a century before: people with Down syndrome thrive when they are cared for and suffer when they are institutionalized. I, however, am cynical and fully expect the special needs card to be hypocritically played. Traditionally, most candidates and elected officials tell the press to leave their kids out of the morass. I don't expect as much, but you never know. Prove me wrong.

Finally, keep your eye on language. This is something that bugs me nearly as much as the misspelling of millennium or the swapping of loose and lose: it's “Down syndrome” - capital D, lowercase s, no possessive (ie, not Down's Syndrome). Also, be aware of phrasing along the lines of Down's kids or Down's babies. This is considered insulting. Would you call the kid down the block a “broken arm kid”? No – of course not, you'd refer to him by name or as “the kid with the broken arm.” This type of phrasing is called “person first” phrasing and is the preferred way to refer to people with disabilities. The notion is that by putting the person first and the disability second, you are stressing the person and not the disability. Oh, and if you really want to sound hip, call it Trisomy 21 or T21, which is a more accurate description of the condition – Langdon Down (who was a pretty astounding guy, by the way), didn't have the tools to attach a genetic label to the condition.

I don't claim to speak for anyone else in the community – this is clearly my own bias, so apply your own grain of salt.
We have no idea what is happening with Sarah Palin and her baby. She could be working with her child every day. She is an educated person. I'm sure she researched up and down regarding T21 and will do the best for her child.

The more likely scenario is that the rest of the family will be taking up the slack and/or they will be hiring help to make that happen. If they hire help, remember whenever you see Trig that he is incredibly lucky to have a family with resources to hire out the help, because most families sure as heck don't.

What is wrong with this scenario? If a man had a child with Down syndrome would we even be asking these questions or worrying about who is going to take care of the disabled child? No.

From what I have heard her husband is in the house a lot. A "house husband" if you will.

Sarah Palin will take good care of her children just like any other working mother does. I'm aware of the huge challenge to take care of a disabled child but I'm not so worried that this kid is going to be neglected by his mother. She shouldn't be made to feel guilty that she isn't there for every PT session. The election isn't until November. She'll be busy for a couple of months, but even then I'm sure she's spending time with her family as much as possible. Nobody is being neglected because Sarah Palin is on the trail.

Thank you for the language lesson. It is helpful and I'm sure most people want to be sensitive to the language, but I'm also sure people are making honest mistakes. It is also considered offensive to call a person a "diabetic", but people do it all of the time, including the very people that have diabetes.
posted by LoriFLA 01 September | 20:42
Yeah, plinth. After Palin's nomination the whole thing went from historic to three ring circus. I think that McCain's advisors picked her in haste and out of desperation. It might have paid off had she not had so much baggage or a lack of experience.

With that in mind, there aren't that many people left who are undecided. If I'm undecided, and I see McCain make a snap judgment after Obama's big speech, then I'm going to have my doubts.
posted by hellojed 01 September | 20:43
plinth, I had exactly your reaction when I heard about this. I'm a special education teacher, and I work with kids who have severe disabilities. I can't imagine how someone would balance caring for a young child with Down syndrome, while also being the Vice President.

I also took offense to the numerous articles saying that Palin giving birth to a child with Down syndrome shows that she is anti-abortion. As if everyone who is pro-choice would automatically terminate a fetus if it was found to have Down syndrome? I certainly wouldn't, and I am not anti-abortion.

I agree that it's going to be interesting watching this play out.
posted by charleena 01 September | 20:59
What is wrong with this scenario? If a man had a child with Down syndrome would we even be asking these questions or worrying about who is going to take care of the disabled child? No.

Repeated for truth.
posted by mudpuppie 01 September | 21:22
plinth - I've sort of been hoping that you'd make a post like this since I heard about Gov. Palin. There is a lot of...ableism, I guess, coming from both sides of the political spectrum.

Lori - did you see this post as a critique or attack on Gov. Palin? I thought it was mostly about media representation of people who have disabilities, and their caretakers, but I'm probably missing something.

What is wrong with this scenario? If a man had a child with Down syndrome would we even be asking these questions or worrying about who is going to take care of the disabled child?

I agree, but then again this isn't plinth's problem, in my book. His post seems to me to be from the perspective of a couple sharing the responsibility of raising a child.

remember whenever you see Trig that he is incredibly lucky to have a family with resources

Also, this.
posted by muddgirl 01 September | 21:36
When did "diabetic" become offensive? What are we supposed to say, "insulin challenged?" Seriously. I am not joking. I see no implicit judgment in the term, no pity, no unvoiced belittling. It's the name of a disease. Is "phenylketoneuric" offensive? What about "My grandfather has Parkinson's?" "I think Dave's an alcoholic?"

Sorry about the off-topic rant; I am generally willing to co-operate in ridding the language of terms and references which are genuinely hurtful, but in order for such a term to be considered offensive, it actually has to offend someone. I have known a number of people who have the condition known as diabetes, and I don't believe it has ever even occurred to any of them that the use of the term "diabetic" is somehow degrading.
posted by deadcowdan 01 September | 21:56
I'm referring mostly to plinth's third paragraph. I did see some of it as a kind of an attack, or questioning of Palin's devotion, or availability to care for her disabled child. It rubbed me the wrong way and I apologize if I was harsh. I'm aware that he said that they are very lucky if they have outside help, but the third paragraph explained how difficult it was to take care of a child with Down syndrome and said things such as This is especially important if Sarah ends up in the White House because Trig will have spent nearly 2/3 of his EI time while his mom is effectively unavailable. Who says that she will not be available? We don't know. Would we be asking if the male was available?

I'm not accusing plinth of sexism. I don't mean to offend charleena either but these types of statements confirm what I'm talking about:

I can't imagine how someone would balance caring for a young child with Down syndrome, while also being the Vice President.

What if the father was VP?
posted by LoriFLA 01 September | 21:58
When did "diabetic" become offensive? What are we supposed to say, "insulin challenged?"

I don't know but it is considered a faux pas. You aren't supposed to label someone as a "diabetic" I'm not offended by it in the least but some people are. A diabetes educator told me this long ago. The correct term is a person with diabetes. Not diabetic, autistic, downs baby, etc. I'm not offended by autistic. I say autistic all of the time, but the PC way is to not label the person by their disease. Timmy has autism. Timmy has diabetes. Timmy has Down Syndrome.
posted by LoriFLA 01 September | 22:05
Actually, if she were a man, I'm pretty sure I'd be asking the same questions. Not every set of parents have chosen the same level of involvement as the Plinths, but this is one of the goals of EI: to get the entire family involved because it makes a lifelong difference for everyone.
posted by plinth 01 September | 22:06
Would we be asking if the male was available?

Would we be asking if the male was "unavailable"?

Plinth, yeah I totally understand what you're saying but we can't assume she won't be involved. Sometimes my nephew that has autism is brought to therapy by someone other than his mother. This doesn't mean his mother isn't involved.
posted by LoriFLA 01 September | 22:08
Oh - and Lori - I do honestly appreciate you pointing out the weak spots in my writing.
posted by plinth 01 September | 22:08
My first niece was born with Down syndrome, and she died at 11 months old because of the congenetive heart defect known to come with the sticky chromosome. She had a hole in her heart that couldn't be closed.

When she was born, it was my brother's first child. I remember talking to him on the phone right after, and he was so excited. Then, he found out that it was likely she had Down syndrome, and he was obviously confused, and not sure what to think. But, then holding her again he knew she was his daughter, and he loved her. This didn't take 2 months or 10 months. This all happened in the first hours after she was born. It was his daughter, and he loved her, and that's all that mattered. My brother is that kind of guy. I can't say that I am since I don't have children and never will. I know I loved my niece from the first moment I saw her, but then I didn't have all the parenting things to deal with.

My niece didn't have the advantage of a lot of programs to help her through her early years. This was 20 years ago or so. My brother had his own business, and made those commitments on his own, and arranged his day so he could be there for doctors appointments and so on.

With a committed family, which the Palins seem to be, and enough support with health care and counseling as to the needs of the child, I can't see how this would be an issue. I'm sure as Vice President, there'll be more support than any normal family will get. In fact, her being Vice President might be the best thing for the child, and for Down syndrome children in general. There's a whole family there, and I bet they'll figure it out. There'll also be a lot of exposure to the issue.

The care of the child, Trig, is the last thing that would concern me regarding Sarah Palin's ability to be Vice President. I'm more concerned about her political views, and her experience. I don't think being raised in the White House, or close to it, is healthy for any children. But for a Down syndrome child, they'd get the best health care and attention in the country.

I see where you're coming from on this, plinth, and how this would be an emotional topic for you. But, really, it's not for us to judge how her family is going to deal with this, or how this will affect Trig any more than it is our place to judge their ability to deal with the pregnant teenage daughter. That's not our choice, that's their choice. What we should think about is who is going to be most likely to make sure that ALL children get the health care, education, and attention they need. That's where we need to be concerned.
posted by eekacat 01 September | 22:13
Plinth, your honesty is profound and very moving.
posted by theora55 01 September | 23:08
I wouldn't be so hard on the usage of "Down's syndrome" -- there's a lot of ingrained usage and there's rarely any intent to be insulting. It's still standard usage in the UK, for instance. There's only about a generation of standardization on "X Syndrome/Disease" named for the discoverer X and "Y's Syndrome" named for the first well-known patient Y (e.g. Lou Gehrig's disease, or ALS). So gently correcting someone is in order.

About Palin's presumed grief, I wonder if there is any, at least as you understand it. The evangelical response might be quite different, God's will and all that. It's a completely different prism in some ways.
posted by stilicho 01 September | 23:32
The issue brought up about language interests me. As a mentally ill person (depression/anxiety) I wouldn't want to be referred to as a mentally ill person because I am more than that although in the right context it would be okay. There is a real stigma and amazing misunderstanding about metal illness and I don't want anyone thinking that is essentially what I am; I am more.

I am also Diabetic. It's not made to be a moral failure like mental illness is. I actually don't think I have ever heard anyone referred to as a Diabetic person as if that was the only defining characteristic of the person. And Diabetes doesn't keep a person from getting a job (that I know of) or really taking advantage or any social benefit.

Plinth, thanks for talking about your concerns. It's good to think about these issues. I've worked in special ed and have had an aunt with special needs and well, I think in our society, there is so much marginalization of people that are truly special; people whose lives are so much a gift to us all. I'm not sure how to say it.

posted by MonkeyButter 01 September | 23:52
The correct term is a person with diabetes. Not diabetic, autistic, downs baby, etc.

I think this language stuff is really important, but there's a continuum. It's most vivid and important (to challenge, avoid) when it's the use of the name of the condition as a noun (not an adjective) for a person who has a condition that is particularly stigmatized. So, particularly not good includes: "Jan's child is an autistic." "Jan's child is an epileptic." "Jan's child is a schizophrenic." "Jan's child is a manic-depressive."

That combination -- noun plus stigma -- really gets my goat. I have a colleague who *constantly* uses the phrase "the mentally ill," and I cringe every single time.

Less dramatic (because diabetes is less stigmatized), but still incorrect, is: "Jan's child is a diabetic." But it's not so cringe-inducing for me.

Also less dramatic is when the word is used as an adjective. "Jan has an autistic child." "Jan has a diabetic child." Another step down in the cringe scale.
posted by Claudia_SF 01 September | 23:59
Sometimes it doesn't matter what words you use. My son was in a new afterschool care, and I mentioned that he's High Functioning Autistic to the teacher when I picked him up.

Next day his dad is pulled aside with "we need to talk" by the central director, asking just what he was doing there, and what are they supposed to do with him and on and on. That "High Functioning" part went in one ear and out the other and they apparently had visions of Rainman.

He got them straightened out, and there haven't been any problems since, but it still rankled.

****

I had a lot of the same thoughts about "leaving" the baby, plinth, but realized that not all people make the same choices, and noted the irony that she had the resources to have those choices, and is working to deny them to others.
posted by lysdexic 02 September | 00:08
What is wrong with this scenario? If a man had a child with Down syndrome would we even be asking these questions or worrying about who is going to take care of the disabled child? No.

Repeated AGAIN for truth.
posted by ThePinkSuperhero 02 September | 00:17
I have ADD and I am frequently put off by people using the term as a descriptor. Even if you choose not to see it as potentially offensive, it's at best imprecise language. This is usually seen from people who *don't* have ADD, but who joke about it or offer uneducated diagnoses of it: "Oh, I'm so ADD!" "She sounds a bit ADD."

Which brings me to another point. Lots of people seem to think that things like ADD, OCD or bipolar disorder are like a cold: "She might have a touch of bipolar," the aforementioned "She sounds a bit ADD." What? Anyway.
posted by loiseau 02 September | 00:18
FURTHER OFF TOPIC OF PALIN:

Also -- For me, I really don't use "mental illness" or "mentally ill" at all any more. Re "mentally ill," whether used as a noun (the mentally ill) or adjective (the mentally ill man), it sounds weird/ imprecise/ stigma-y/ dated to me.

People use "mentally ill" to describe all psychiatric conditions, but when pressed they often mean people with severe conditions only, or people viewed as "low functioning." (Imaginary conversation: "Do you think I'm mentally ill?" "Oh, no, not you. I mean people who are really sick.")

After a while I ditched "mental illness" as well. I tried different ways to mix up "mental illness" with other terms, but it never worked that well. Now I tend to use "psychiatric condition," "psychiatric disability," "severe psychiatric disability," "people with psychiatric conditions," "mental health conditions," a person with [insert particular condition, e.g. depression], etc.

I remember the first time I learned in 1985 that "AIDS victims" was not the best way to refer to someone with AIDS. It really opened my eyes.

* * * *

RE PALIN:

The disability rights community tends to value personal experience. In part for good reasons -- personal experience is what fueled all of the achievements over the years. Parents of kids with disabilities got the IDEA passed, push for regulations. People with disabilities created coalitions, reached out to senators and congresspeople with family members with disabilities, and got the ADA passed.

In part it's not-good -- there's sort of this jumping to the personal above policy and commitment. When O'Connor was on the Court, there was this whole theory, "Oh, O'Connor had a disabled clerk last year," so she's going to be friendly now. Or the boards of disability rights organizations -- that the boards have to be 51 percent PWDs. Which is great, totally, nothing about us without us, but I wish the focus was "100 percent competent and committed to the cause," as much as majority PWDs.

Now there are some in the disability grassroots who are excited about Palin. In some ways I agree -- she has (and will have more) personal experience with disability. But much much more I think, well, what would she do for disability law and policy? (Crickets chirping.)
posted by Claudia_SF 02 September | 00:23
That combination -- noun plus stigma -- really gets my goat

So do we stop referring to those who follow the tenets of Islam as Muslims? There's definitely a stigma attached to that label. What about telemarketers?

"Jan has an autistic child." "Jan has a diabetic child." Another step down in the cringe scale.

I dunno. Maybe I have a tin ear, but "Jan's child is diabetic" and "Jan's child has diabetes" are both denotative and connotative equivalents; neither even registers on the cringe scale. I think I'd get kind of irked if someone presumed to correct me if I used the former in conversation.
posted by deadcowdan 02 September | 00:42
Everything I've read has said that Todd Palin is the primary caregiver for the children; all of his work experience tends to be given in the past tense, except possibly for some seasonal fishing work.

From the Anchorage Daily News:

At home, [Todd] Palin takes care of the cooking, the bills and other domestic paperwork, in addition to driving the kids to extracurricular activities like basketball and soccer, according to his wife. He divides much of his time between Wasilla, where Track is recovering from shoulder surgery, and the capital in Juneau, where the Palin daughters are in school.

"He can go on just an hour or two of sleep a night. He says, 'I can sleep when I die,' " said Sarah Palin. "There is no way I could have done this job without his tremendous contributions to the home life. He's able to keep it organized, like a well-oiled machine."


What's interesting to me is that no one would be asking about childcare if Sarah Palin were male, because it would just be assumed that the wife was taking care of that. Yet few people are making the complementary assumption in this case, even though it seems to be factually accurate.
posted by occhiblu 02 September | 01:00
neither even registers on the cringe scale

Right -- that was part of what I was trying to say -- that diabetes is not a good example. That the other conditions (e.g. "an epileptic") show the issue much more clearly.

I don't know about "he's a Muslim." "The Jews" or "he's a Jew" sounds off to me, but religion's not really my world.

I like to think and talk about medical/disability language. I don't go around correcting people (for the record).
posted by Claudia_SF 02 September | 01:32
Repeated AGAIN for truth.

Yes, I saw it the first time. I was picturing myself in her shoes and saying "well, I sure couldn't do it." It wasn't a judgment against her, just thoughts that came in my head. I'll defend her right to make choices all day long. I just find it sad that I'll likely have to fight those for those rights against her
posted by lysdexic 02 September | 05:54
I'm out of town, and this is the first time I've looked at Mecha in a week, and so I logged in mainly to say that, as you're listening to McCain talk about keeping people's children out of politics and whatnot, I hope you'll remember that joke he told about Chelsea Clinton and Janet Reno back in '98.
posted by box 02 September | 08:51
link to what box is referring to (b/c I had to look it up myself).
posted by ufez 02 September | 09:12
Just a note - Todd Palin is not a stay-at-home dad - he works for BP as a production operator at the North Slope field and is also a commercial fisherman. Neither of these jobs are traditional 9-to-5. From what I've heard, oil operators working at remote locations usually work a few weeks on, then a few weeks off. Of course, we don't know how this will change if Sen. McCain is elected and the Palin's move to DC.

I believe, by the way, that Gov. Palin's family should be off-limits during this election, just as a male candidate's family is traditionally off-limits. However, I think plinth makes a good point in that the Republican party will almost assuredly use Gov. Palin's home life as a "sell" to certain of their consituents, just as some Democratic party members will use it to critique her beliefs or whatever.
posted by muddgirl 02 September | 10:23
...as you're listening to McCain talk about keeping people's children out of politics and whatnot, I hope you'll remember that joke he told about Chelsea Clinton and Janet Reno back in '98.

Oooh, nice! I can't wait to see how the media is going to hold his feet to the fire on that one! /delusional
posted by Atom Eyes 02 September | 10:36
muddgirl, where are you getting the current BP job? The article I linked said that he used to work for them but didn't currently -- but, granted it's a year old -- and his official bios that I'm finding are being vague enough about his work history that it sounds like they're trying to cover rather large employment gaps.
posted by occhiblu 02 September | 11:45
His wikipedia page (yeah, I know) has a pretty decent summary of his work situation, sourced from articles written after Gov. Palin accepted the nomination.
For 18 years, he worked for BP Oil in the North Slope oil fields of Alaska. In 2007, in order to avoid a conflict of interest, he took a leave from his job as production supervisor when his employer became involved in natural gas pipeline negotiations with his wife's administration. Seven months later, because the family needed more income, Todd returned to BP, and again in order to avoid potential conflict of interest he accepted a non-management position as a production operator. He is also a commercial salmon fisherman at Bristol Bay on the Nushugak River. Financial statements filed in 2007 state that Palin earned $46,000 from his fishing business and $46,790 from BP.
posted by muddgirl 02 September | 11:49
Wow, that John McCain "joke" is just ... wow.
posted by Claudia_SF 02 September | 11:59
Thanks, muddgirl! That is the one link I had avoided. :-)
posted by occhiblu 02 September | 12:28
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