Children with Special Needs Should Not Be Used As Political Emblems

With 19 days before the election, having just watched the final Presidential debate, it is time for me to publicly weigh in on the issues that are most vital to me. Not surprisingly, among the primary issues for me are  education and special education. Senator McCain's position in favor of vouchers will in no way strengthen public schools, any more than draining blood from a person fortifies their health. Although public schools have much to improve upon, and I will and have fought on a case by case basis for out of district placements; to systemically weaken public education would not make for a better education system and in the process would not help nor improve the lot of students with special needs. It is an ideological position that will permanently and irrevocably leave students with special needs behind.

I have been simmering on a daily basis every time Governor Palin holds up her son Trig as a political symbol. I have to say, that I think all small children should be left out of the political forum, and it is wrong to use an infant with special needs as an emblem of your own personal rectitude.  As to her comments that she will be an advocate for children with special needs, this statement rings hollow with me personally. She may be sincere in these statements, but I do not think she realizes how little she knows about what it means to raise a child with special needs, or the daily struggles against deeply ingrained stereotypes about children with Downs and special needs generally.

She has not even begun to know the daily pain of fighting small battles when well-meaning people touch your young child's head and body invading any sense of personal space and privacy. Or the people who say "is he tired" for the umpteenth time when he is slumped on your shoulder; the reality is that his head control has disappeared that day, and you would prefer to just have a private outing with your family without well meaning intrusions. Obviously, the big arena that she has not experienced at all is the fights over so many things in school. In this life it is important to know what you know, and it is even more important to know what you do not know. She does not have any sense as to how much she does not know. She is not a knowledgeable member of this involuntary club called "Special Needs Parenthood" and I am disturbed that she thinks she is.

Finally tonight when Senator McCain brought up research for autism as a political brownie point, I had to speak out.  He has obviously read the statistics from the CDC that 1 in 150 children have autism, which represents a lot of moms, dads, grandparents, aunts and uncles and friends and others that care about children with autism. It is wrong at this late date to shill yourself as a champion for the vulnerable populations of children with autism, when he has no record to speak of before now. Senator Obama and for that matter Senator Clinton have taken affirmative positions on funding and supporting efforts for children with autism.

Children with special needs whether those with Downs or Autism or CP or any other disability are not emblems to be held up for political gain. It is offensive and wrong! If Senator McCain's voting record with President Bush was not enough to disqualify him for the Presidency, then his use of children with special needs as a political tool certainly rules him out once and for all. I think Senator Obama is thoughtful and steady and qualified,  but he has also shown that he is respectful of the people and issues that matter most to me. He has my vote and for what it is worth my hearty endorsement.

[Here is another blog taking a similar perspective on the debate.]

Comments

[Margo/Mom]

Charles:

Thank you for putting into words what many of us, I am sure, have been feeling. I cringed when I heard Trig used as a defense of an anti-abortion stance--sort of a look at me, how good I am that I didn't abort my defective baby kind of thing. In her first speech as a candidate, when she touted herself as an advocate for those with special needs, I remember thinking, does she know that the DC Public Schools--who would be responsible for her son's education--are two years behind in completing evaluations of students with special needs?

I am happy that she enjoys her son's specialness--his vulnerability as she put it. We all have. But we also have been there with an infant and realize how different your child's special vulnerability is when they are an adolescent and the other parents just want him to go away, so that the other children, their children, the children who really want to learn, can get their education.

[A Parent of a Kid w/autism in WA]

I heartily disagree with you on most of what you have written, but primarily these three points:

1) That voucher will weaken public schools
2) Your assertion that Palin and McCain is "using" a child (Trig) or special needs children in general for political purposes
3) That Obama has a better track record of support of special needs kids and the disability community and thus is worthy of endorsement to that end.

I doubt you will post my comment, which is why I am not taking the trouble to elaborate on and defend my disagreement with what you've written. If you would like your views to subject to some scrutiny and debate, however, let me know, and I'll give you my reasons for disagreeing with you.

Incidentally, I've been reading your blog for a while, and this is the first time I have to heartily disagree with you FWIW.

Sped Mom/Advocate in WA
COPAA Member since 2000

Ed. Sorry you think so little of my willingness to encourage lively debate.

[Monica]

I wholeheartedly agree with you. I have found the fact that McCain, after calling the Community Choice Act too costly, and not supporting the Expanding the Promise to Individuals with Autism Act of 2007, would suddenly care about my autistic daughter.

All the McCain supporters who use the "she didn't abort him" rhetoric. As if one deserves a medal for not murdering a baby just because they are different.

Are all republicans in this much favor of eugenics?

I threw my slipper at the TV when McCain dropped the A bomb last night.

How dare he use the struggles my child faces daily as a platform to gain votes by deception?!?!

I spent an entire 10 minutes enamored with McCain/Palin when she was introduced, because of Trig. For a fleeting moment I had such hope.

That hope quickly vanished when I began researching just what each candidate has done for those with special needs.

[Daunna Minnich]

Pandering for votes seems to be as natural among politicians as the instinct among voters to melt inside and coo at the sight of a baby. I wonder who will melt and coo when they encounter Trig two decades from now, as he joins the ranks of adults with disabilities, who outnumber children with disabilities by 9 to 1?

How interesting that Baby Trig's Down Syndrome would spawn enthusiasm in John McCain for autism research. Learning how to prevent any kind of disability sounds good to me but I don't know how to reconcile McCain's call for autism research with his across-the-board spending freeze.

Given a choice between research to prevent autism and support for individuals already living with autism (or any other disability for that matter), I'd go for the latter. To that end, I want to know what the candidates propose to actually do to make it possible for individuals with disabilities to live meaningful and productive lives. Here's a long, but great article from a disability activist that details the candidates' stands on education, health care (including mental health), medicare, employment, and civil rights as these issues relate to the disabled population:

http://www.patriciaebauer.com/2008/09/15/paul-longmore-open-lette/

[ReesieKitty]

I recently worked on a new magazine for parents of children with special needs in the Chicago area. In the 2 1/2 years I've worked on it, I've had the privilege to talk with many parents and advocates. I didn't think they would be fooled by the McCain/Palin campaign's sudden 'support' for special needs and disabilities or that they would believe in Sarah Palin's newfound expertise on autism. The parents I have met advocate tirelessly for their children and know how to do their own research and go beyond just believing what they are told. They have had to. Every time I see that baby held up to the glare of hot lights and loud crowds, I wonder " Why isn't he at home?" or at least back in the hotel room. I really feel that Sarah Palin has put this campaign ahead of her own son's well-being, and I cannot respect her for that. Her record on special needs is not impressive by any standards and nor is Senator McCain's. I and other marketing people believe that the campaign has deliberately chosen to portray Trig as 'autistic' - allowing them to repeat a media buzzword over and over, hoping that just SAYING the word will convince parents that they really care about their kids' well being. But I don't believe it and I don't think parents of kids with special needs do either.

[kdruben]

I am glad that someone finally spoke up about all of this. I have been simmering every time I hear Sarah Palin discuss how she should be lionized because she did not abort a child with Down Syndrome. It makes me wonder what her beliefs are about all people with disabilities since she appears to have thought twice about having this child after she learned of the diagnosis. Given her rabidly anti-abortion stance (opposes abortion even in cases of rape or incest), the fact that she would think twice about having a baby with Down Syndrome really calls into question her status as a champion of the rights for people with disabilities.

The good news for advocates of people with disabilities is that there is another race that is openly calling attention to a Congressman who fought for funding to help soldiers who have traumatic brain injuries... check out the ad (on my site) being played in New Mexico for Tom Udall... it puts the veteran with the disability in a positive light and shows exactly what people who have limited verbal abilities can do... the name of the ad is "Humbled" and you can find it by clicking on my name below this post.

[George Pappas]

Dear Mr. Fox:

Thank you for all your hard work and dedication on behalf of our special children. I disagree but certainly respect your opinion that Senator Obama will provide a better future for our children.

Your judgments regarding Governor Palin and her little son illustrate the intollerance that we, as parents of children with special needs, must fight every day.

Sarah Palin received a prenatal diagnosis that her child had Down syndrome. She made the decision to continue with her pregnanacy. In April, Trig was born and she did not hide the fact that he had Down syndrome.

At the end of August, Senator McCain offered her the opportunity to be her running mate and she jumped at the chance.

At the Republican National Convention, she introduced her entire family to the American people, which included her son Trig. Would you, as an advocate for children with special needs, have preferred that she kept Trig away from the convention? What message would that have conveyed to the American people?

You also question her ability to understand and her sincerity when she says that she will be an advocate for children with special needs, but you provide no basis for you opinion other than she is a republican and that she has only been a parent of a child with special needs for a few months. Are you saying that we would be better off with a cantidate who has never received the difficult news that his or her child has a developmental disability?

Here is my analysis of life with a special needs child:

When my son was born, I had no idea what Down syndrome was and what raising a child with Down syndrome entailed. After a few days, I dried away the tears and learned everything I could about my son and how to unlock his full potential. I was proud of my son and would talk about him to anyone who would listen.

My wife and I became involved in support groups. One of the primary goals of these support groups was to make the public and our children's typically developing peers aware that our children were more similar to them than they were different. That was eight years ago and we have never given up our mission of promoting awareness.

By standing proudly with her son on that stage, Sarah Palin sent a message to people around the world. Children with developmental disabilities may, in some ways, be different, but they deserve all of the love respect and opportunity that all children deserve.

We, as the parents of children with special needs, must remain united in our advocacy for our children. Judging and critisizing the actions of a national political figure who has raised the issue of special needs resorces seems counter our children's best interest.

As I said, I have a great deal of respect for your work on behalf of special needs children, but I think you should take a step back and examine Governor Palin's actions through an objective, and non-judgmental, lens. That is what we want society to do for us and our children, and we should demand nothing less of ourselves.

Ed. George: Your dissent to my blog post is well stated and I sincerely appreciate your views. I will not debate you but will simply state that being candid about having a child with special needs is different than rhetorically and on camera exploiting your child for political ends.

Charlie Fox

[Margo/Mom]

George:

I disagree that Sarah Palin is figure who has raised the issue of special needs resources. Her talking points have not focused on resources, but on her son's specialness, with allusions to people who believe in abortion and don't understand what she has experienced. I haven't heard from her either the humanity of wrestling with difficulty and seeking answers, or the realities of confronting a need for systemic change and support. She does heartily advocate for government to get out of people's way--which frequently leaves people like Trig in the dirt.

I am not at this point wholly satisfied with either side's plans for education. Certainly as a single parent I am in no position to judge someone who returns to work days after her child's birth, or who takes her kids to work with her--but I am just not hearing a depth of understanding from Sarah Palin (about anything, to tell the truth), and I don't think that her son compensates for this lack.

[George Pappas]

Margo:

As a parent of a child with special needs, I understand your concerns about Governor Palin's statements and whether the reality of her advocacy for children with special needs will match her rhetoric. (As an aside, I believe that it will and that she will be a great friend to the special needs community for years to come, but that is irrelevant for purposes of this discussion.) The way I see it, she raised the issue of children with special needs at the Republican National Convention and the first commitment she made was to our children. By speaking those words in that forum, she took our issue and brought it to the forfront. By speaking those words in that forum, she raised awareness to a level that we, on a local level, can only dream of.

I apply the same standard to Governor Palin's comments that I do to everything involving my son: Does this have the potential to make my son's life a little better? I think it does.

At this point, I am not really concerned about who the messenger is as long as the message is delivered to the largest audience. This is big picture stuff and we cannot become bogged down in questioning the motivation of our messenger. Take it for what it is. This is the greatest free publicity that no amount of money could buy.

For a few minutes during that convention, I looked at my television and saw my son being held by his big sister. For a moment, the whole world saw how special and precious our children are. Maybe a child who happen to be watching stored that memory away in his or her mind and maybe, just maybe, he or she will be a little nicer to our child on the playground. Or maybe, I should take off my rose-colored glasses and see the world through my cynical adult eyes for the cold, cruel place that it is. On second thought, I like my glasses.

[Lynne Lazcano]

If you think that Obama--whose daughters' tuition at Univ. of Chicago Lab Schools is $38,000 per year--can identify with average parents whose kids are bullied, written off as not very smart, and kicked around in school, you are sadly mistaken. He is an ELITIST. Period.
http://www.ucls.uchicago.edu/operations/registrar/tuition.shtml

[Kathy]

I was very sorry to read your comments about Sarah Palin. I didn't like it when the media accused Palin of using Trig, but it disappoints me to realize that people in the special needs community are hard-hearted enough to assume that a fellow parent would use their child in that fashion.
I,too, have a young son with Down syndrome, and I loved seeing Trig up on that stage with the rest of his family. That was the whole point..he is part of a family. If Governor Palin had left him at home, there would have been plenty of comments about well..hmm..think she is ashamed of him?? he sure doesn't get to see his mother much, does he?" and so on and so on. She is never going to please those who are intent on picking her apart and second guessing her motives. I don't know what she will do for people with special needs if she is elected...I believe her when she says she will be an advocate. I also know that Ds has had more positive coverage in the last couple of months than we have ever had. Those who aren't looking to find fault see a woman whose life was not ruined by having a child with Ds. Isn't that what we are always trying to tell people? That our lives are richer for having our kids? Yet when Sarah Palin comes along and shows the world that having a child with Ds does not mean that a woman has to give up her career, that the child is a valued member of her family, people twist that into something ugly. I cannot believe some of the hateful things that are being said about her.
I cannot understand why Obama is given a free pass on his promises, yet Palin is scrutinized and found wanting with no evidence to support your bias against her.
And yes..you bring up abortion. Please remember that Obama has said that he wants to keep abortion legal so that his daughters won't have to be 'punished with a baby'..any guesses as to what his reaction would be if his daughter got the news that Gov Palin did?
Governor Palin said that the news that Trig had Ds was very hard to hear..she has never given any indication that she thought she was any better than anyone else or that she did anything out of the ordinary by giving birth to Trig..she loves her son and is proud of him. I am sorry that you are not able to recognize that.

[Sherry Hollis]

I agree with Lynne Lazcano

[Danielle D.]

I agree 100% with you, and like a lot of people said, it is good to finally see it in words. I think it is very interesting that Palin has this child with special needs, and has been showing him off as a political symbol and McCain waits until the final stretch of his campaign to acknowledge another disability, autism. Autism is growing in public awareness with certain celebrities speaking about hteir children having them. You would like to think that he would be more concerned with the issue, and would have addressed it a lot sooner. I feel his party spends too much time with menial arguments (such as Obama's taste in music) rather than focusing on important ones, such as autism. Obama has my vote as well.

[George]

Charlie: Came on the blog looking for your thoughts on Palin's policy speech and found this diatribe. You are right, she has no idea what she is up against raising Trig. But do you show the least bit of empathy for her? I think not. If she lived in IL. she could well be your client in a few years. Would you refuse to help her because she's a conservative. God (would) forbid! Most of your blog is a regurgitation of the liberal bias that is destroying free speech in this country and cannot be taken serious. As advocates we must take our bias to the cloakroom and not in the public arena. I have no hope in any candidate to make life better for our citizens with disabilities. It happens one heart at a time. Do you really believe that some of the districts we work with if they had adequate funding would behave differently towards their special needs children? Don't be deluded! Everything is a matter of the HEART! AND by the way I LIKE PALIN'S HEART!

Keep fightin' brother!

Ed. I guess that is where we disagree I do not trust her heart or compass to do the right thing for students with disabilities.

[George]

Charlie: She wears her HEART on her sleeve, it's okay open your eyes and look at a conservative fort once and you will see her heart.

Ed. I am open and look beyond labels to her lack of intellect, integrity and perceived lack of sincereness.

[Gayle Crabtree]

You are right on target. Children should not be used for political gain. When Sarah Palin began waxing eloquently about being the mother of a special needs child I cringed. At 3 months, she has no idea yet...That took away from so many families. Thanks for shedding light on this.

[Phyllis Musumeci Palm Beach County, Florida]

Dear Advocates,

I just got home late last night from the press conference held on 01/13/2009 in Washington D.C.on Restraint and Seclusion that was organized by the National Disability Rights Network.

The conf. went well yesterday and lasted about 45 minutes.

NDRN gave a very powerful introduction then Sen. Dodd spoke, 3 families from Connecticut reported their stories on restraint and seclusion and then I talked about Florida. I talked about what happened to my son in public school, how I found Florida families all across the state with similar abuse stories of R & S, the creation of my awareness blog and hundred's of families from all over the U.S contacting me with similar abuse stories of R & S in the public school system. I think everyone at the meeting was aware that restraint and seclusion of children with disabilities is a widespread problem all across the United States in public schools.

Regards,

Phyllis

National Disability Rights Network Releases Shocking Report on Seclusion and Restraint in U.S. Schools.
School is Not Supposed to Hurt
Go to http://www.napas.org/ and click on "School is Not Supposed to Hurt" to review the report written by NDRN.

[Sue Keller]

Well, I don't really care if someone "uses" children or adults with disabilities for political gain. I guess that I'm just like one of those publicity hacks who believe that any publicity is good.

I used to try to alert the local newspapers where I live to the issues of getting a free and appropriate public education to kids with disabilities. I cited statistics and mentioned that the IDEA and all its earlier incarnations has never been able to pry the elusive federal portion out of Washington, DC for local special education budgets since 1975.

I even had a reporter lined up to attend my son's IEP at one time. Unfortunately, our paid advocate was busy at another IEP in Baltimore city in which she had to duke it out for 6 hours with the City Schools' attorney and so had to miss our scheduled IEP. At the re-scheduled IEP, I was unable to get the reporter to return my calls and she never showed up at the IEP, even though she had previously been made aware of the date and time of the new IEP and had even confirmed that she would come.

Children and adults with disabilities live on the margins of our society. Kids w/disabilities rarely get the appropriate education. Add other critical factors such as low income, or non-English speaking parents, or underperforming school districts and you have a recipe for future tragedy for most children with disabilities. They will never recover from the lost years of suffering through a substandard and inappropriate education.

Adults w/disabilities have the highest rate of unemployment of any demographic. They have lived through inappropriate educations already and their present reality is our children's future.

So, please feel free to use me or my child for political gain or publicity or any other damn thing that puts the issues of special education and improving the quality of the lives of people with disabilities in the forefront. Because I don't see a civil rights movement for people with disabilities fomenting any time soon, at least not one with the heat and energy that propelled the plight of African Americans to our collective attention.

We still have people recommending that the best way to deal with people with disabilities is to perfect more "in utero" genetic testing for all disabilities so we can simply eliminate any one who is not up to par. Imagine someone saying that in reference to a person who is African American or gay. It's verbal violence that advocates genocide. In the space of 3 generations, we are forgetting that the main reason that the Nazis were so reviled was their espousal of eugenics.

[Equal Access]

Thank goodness your guy got elected.

Please sophisticate for your readers how it is okay for Obama to say (on Leno, no less) "it's like the Special Olympics or something".

Please sophisticate for your readers how your opinion on Obama making this remark would have been the same or different had Palin said it.

You were "simmering on a daily basis" because you just plain didn't like Palin and had to find a way to sophisticate it. You couldn't do it by attacking her ideas, so you did it by questioning her motives.

That's a pity. If anything deserves that kind of lack of benefit of the doubt, it's the school districts that have had over 35 years to comply with the idea, yet you give them the benefit of the doubt based on the whole lack of sufficient funds meme. But you choose to give the schools -- institutions that continually violate our kids' rights - the benefit of the doubt despite proof of their of their disingenuousness and deliberate indifference, and instead project abject posturing on a mother of a disabled child who deserved the benefit of the doubt until proof showed otherwise.

Is this how you treat your clients?

You're judgment is questionable at best.

[George Pappas]

Hello Charlie:

Just returned to take a look at this thread as it seems more relevant than ever.

President Obama's remark was unfortunate and I have no doubt that he is sincere in his support for children with developmental disabilities; however, I have a few issues with how he has dealt with the aftermath:

First, the comment was made on the Tonight Show in front of a live studio audience and broadcast to millions around the country. The apology was to Tim Shriver over the phone. If the comment was in a public forum, then the apology should be in a public forum on the same scale and not through a spokesperson.

Second, the speacial needs community cannot be so quick to forgive and forget because of the President has increased funding and services for those with special needs. Our special children and loved ones are entitled to all the dignity and respect that any other person is entitled to and the idea that this funding and these services somehow absolve him of responsibility for his statement is offensive. President Obama's administration has reiterated through its rhetoric and its actions that "words matter," and his remark is a perfect example of how true that theme is.

Finally, President Obama just completed a tour of Europe and Asia where he apologized for the arrogance of past administrations, but we have yet to hear an apology to our special children and loved ones.

In the end, I am thankful to the President for the additional resources he has provided for those with developmental disabilies. I certainly do not want him to provide additional resouces as penance for his hurtful remark. The only thing I want for my son and others with developmental disabilities is a sincere and public apology as this will send a message to the world that the leader of our country has as much respect for the least among us as he does for every other person in this world.

So, to tie these comments to those above, I would rather have children with developmental disabilities treated as props rather than as a punch line.

[DannyS]

That article is so great! But aside from that breaking report let me impart new concern to you. Eunice Kennedy has been hospitalized, and is reportedly in critical condition. Eunice Kennedy, better known as Eunice Kennedy Shriver, is the wife of Robert Sargent Shriver, and the sister of John F. Kennedy, and therefore Robert, Rose, and Edward. She helped found the Peace Corps and the Special Olympics, and her oldest daughter, one of five children she had with Robert, is First Lady of California, Maria Shriver, who married Arnold Schwarzenegger. Hers has thus far been a life of privilege, but that privilege was used to serve the greater good, as she had done great work and given many cash advance to good causes. The world needs more like Eunice Kennedy.To read more visit http://personalmoneystore.com/Cash-Advance/.