Your thoughts, please!
September 4th, 2008
From the standpoint of history, the Republican convention seemed to mark a watershed moment for the disability community at large.
Sarah Palin’s speech last night included a rousing commitment to the disability community. Her baby son Trig was featured prominently in the news coverage of the convention, and she held him in her arms as she acknowledged uproarious applause from the crowd.
But what does the McCain-Palin candidacy really mean to the disability community?
A few questions to consider:
- Is Trig Palin’s presence on the stage and on the campaign trail likely to create a greater understanding and acceptance of people with Down syndrome and other disabilities?
- Is Gov. Palin’s pledge to advocate on behalf of “families of special needs children” a promise she’d carry out if elected?
- Are people who care about disability rights issues likely to support the McCain-Palin ticket over the Obama-Biden ticket?
- What do people in the disability community think about the ongoing debate over Palin’s role as a mother? Should parents (especially mothers) of children with disabilities hold challenging professional positions?
- What impact will the Palin family have, if any, on the rates of prenatal diagnosis and selective termination for Down syndrome?
- How will Trig fare over the next months of the campaign, and if his mother is elected? Do you think it’s appropriate for his parents to have brought him into the international spotlight? And …
- How can we convince the media to stop using terms like “Down syndrome child,” “Down’s child,” and “Down child”? (Screen shot from the home page of the Washington Post.)
Please post your comments.
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on Thursday, September 4th, 2008 at 9:31 am and is filed under Campaign 2008, Down syndrome, NOT2BEMISSED, celebrities, commentary, politics.
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September 5th, 2008 at 12:01 pm
If women would feel truly supported in their choices (to test or not to test), and the consequences of their choices (to keep the baby or to abort), maybe more women would decline screening. We need to strive for a society where women truly feel free to choose, and these choices need to be supported in words, deeds, services. Maybe then more women will feel empowered to refuse to screen their babies for ‘excellence’.
The extreme focus on having perfect genes as a prerequisite for happiness and good quality of life is too ridiculous anyway. There are more factors necessary to lead a healthy, fullfilling life than just having the right genes. How about a right social environment, being surrounded by caring people and a decent meal and roof over your head.
Should women with children with special needs be allowed to have challenging careers? absolutely! Should Palin be allowed to pursue her career? Hmmm…given her strong anti-choice, and strict ‘family’ ideas, she is not practicing what she preeches.
September 5th, 2008 at 10:48 am
I heard Sarah Palin’s sister interviewed the night of Gov. Palin’s speech. The sister said that she had a child with a disability that is now, I believe she said, thirteen years old. She also said that her family was very close. This makes me think that Gov. Palin may already know many of the challenges people with disabilities face. Does anyone know what the sister’s child’s circumstances are?
September 5th, 2008 at 8:55 am
My wife was over 35 when pregnant with our first child, and 38 when pregnant with our second. Genetic testing was nearly forced upon us, but we declined. We are as liberal as they come, are long time supporters of Planned Parenthood and the right of women to choose. But we had made the commitment to have children and were not going to have an abortion unless my wife’s health was seriously in peril.
If our children had been born with Down Syndrome or any other disability we would have dealt with that. I have the means and the knowledge to take that on. But I know that is not a commitment that everyone is ready to make and our society does not provide an adequate amount of support throughout the lifetime for people with disabilities. Which is why I will always say that there must be the room for families to make the choice as sad as that may be.
What is missing from our cultural knowledge is the joy and positives that people with disabilities can contribute. What is all too prevalent is the negatives - the “burden” of people with disabilities, the view that a life with a disability is a disabled life, somehow less valuable. It is no wonder that so many choose abortion over disability.
In this regard the Palin family decision is a ray of hope, and a fantastic example that having a child with Down syndrome is not the end but a beginning and is part of a full and active life. Why can’t a mother be VP? Why would the fact that her child has Down Syndrome be at all important in determining her qualifications to be VP?
But I am not so one dimensional to vote for someone solely on that basis of their race, gender, or family composition. I hope that my fellow Americans feel the same. There is so much about McCain and Palin that scares me I would never in a million years vote for them.
September 5th, 2008 at 7:51 am
Thank goodness there are other parents out there thinking the same thing as me. Sarah Palin Does NOT represent the DS community.
I am frightened that people who know nothing about DS will look at her as our spokeperson when she had no clue what it’s like to raise a child with DS. Another thing i would like to point out is that Ms. Palin is lucky enough to have money in her pockets so that she can get the best things Trig needs, however like the rest of us we have to fight to get Mediciad coverage so that we don’t go bankrupt when their child is sick or has heart surgery or three ear surgeries with the insurance having a huge deductible which falls onto us the parents!
I am currently fighting my school about pre-school for Gods sake but Ms. Palin can send Trig to any school she wants because she has money! Not to mention that rural America which is where I live only has 2 pre-schools for the surrounding 6 towns. If she truly understood what it is like for parents who are raising children with disabilities she would see the struggle that we make every day for our loved ones. Also this is a mom to mom subject but no way would i return to work 3 days after my child was born knowing that he had special needs. I
am surprised that Trig did not require additional hospitalization after he was born. We could not bring our daughter home until we learned CPR, how to feed her, how to give her medications, how to position her (she as really floppy) and she required a car bed to come home in because of her tone.
This women DOES NOT represent us!
September 4th, 2008 at 9:54 pm
As a mother of a 6 year-old with Down syndrome, I was suspicious, leery, and a little offended about her pledge to be an advocate for “families of special needs children” [wasn't crazy about her language choice there]. I don’t think she has any idea what raising a child with Down syndrome is like: he’s not even 5 months old! I was still learning about Down syndrome when my son was 5 months old and still reframing and revising my entire future. like.
Moreover, WE parents are the true advocates for our kids. WE are in the school meetings struggling and striving to understand IDEA, LRE, and IEPs. WE are driving to therapies and doing extra therapy work at home that we wouldn’t necessarily do with a typically developing child. WE are arguing with doctors and insurance companies to approve expensive alternative therapies. WE are waiting for the confirmation letters from family support services through our counties that says we’re off a wait list for services or funds!
Ms. Palin will not be doing those things. I don’t know what it is like to be Vice President, but I can only imagine it is an extremely high-pressure job that often trumps a family that has a lot of outside help or a lot of help that comes to the house. She does not and will not have a realistic, day-to-day picture of what it is like to raise a child with special needs in this country. I cannot say it enough: WE are the advocates. And our constitution is written to promote helping people gain respect and equality…Of course it doesn’t always happen, but I have a hard time believing that any president/v-president will let that fall by the wayside. Look how much progress has been made in the last 30 years by parents and self-advocates working their way up from small community efforts to the national level.
I have a hard time not seeing darling baby Trig as a token “special baby” to gather sympathy votes and that makes me absolutely sick to my stomach. I hope that other thinking people can see through that, too. And to hear Mr. Dobson say on Fox News, “I’ve not met her yet, [Palin] but last April I wrote a letter to congratulate her and thank her for keeping that little Downs baby…” I wanted to drive to Colorado Springs and punch him in the face. Shame on him for that language. It is 2008 for Pete’s sake. I think overall, though, the media has stepped up to use the preferred people first talk, however, it is upsetting that they cannot mention Trig without following up with “her baby with Down syndrome.” When will he ever just be “Trig?” They don’t say, “And there’s Bristol, her pregnant teenager.” What a double standard.
I am a follower of Jesus Christ. I am a woman and a wife. I am a mom of three young boys, one of which has Down syndrome. And I am voting for Obama, and I hope that you do, too.
Thanks for reading.
September 4th, 2008 at 7:23 pm
I am so glad to know that there are other parents of “special needs children” that were put off by Sarah Palin’s showy attempt to rally our support!
She has not done her homework about the disability community. She did not even know enough use person-first language when speaking of her own child and promising to be my advocate in Washington.
Furthermore she seems to have a great problem with community organizers, seeing them as people without responsibilities. Is she aware of organizations like The Arc and PACER?
Both of these disability advocate groups as well as thousands of local groups throughout this country were started when parents began to organize the disability community. It was and continues to be these grassroots organizations that fought for the ADA, IDEA, IDEIA and the hundreds of other laws affording people with disabilities the rights to an appropriate public education and a safe, meaningful place in the community to work, live, and play.
Shame on you Sarah Palin. It’s time to do your homework. It will enhance your life as a politician and become critical in the life of your son.
September 4th, 2008 at 5:13 pm
How comforting to know that there are others out there who can still recognize a wolf wearing sheepskin.
I live in Cincinnati and believe me when I tell you that if there was a way my neighbors could amend the constitution to give Bush and Cheney more time to finish up, they would do it.
Our property taxes are record high but that’s because our federal government representatives use that “small government” rhetoric pretty much stripping away the federal agencies advocating for children and adults with special needs.
September 4th, 2008 at 1:37 pm
I would propose another question, focusing on the campaign’s decision to bring both Bristol and Levi into the national political limelight as they become unplanned married teens and soon unplanned teen parents: Are there implications in this decision for people with disability generally, or for people with Down Syndrome and their families?
My answer: These two teens need to focus on and deal with private issues. The statistics for two teens in similar circumstances making a healthy and happy long-term family life for themselves and their child are not high. Making them a national political statement and a new national soap opera is using them with no regard for their welfare, for what they and their child need NOW. This is not a good sign for Trig’s welfare.
Will this behavior by Sarah Palin and John McCain be converted to a good sign in the future for Trig, or for self-advocates with Down Syndrome, or for families of people with Down Syndrome, or for people with disability in general? Time will tell. Meanwhile, pray for the welfare of Bristol and Levi and their child.
September 4th, 2008 at 1:12 pm
As the President and Founder of an organization dedicated to creating opportunities and improving the quality of life for youth with disabilities for the last twenty years, I can say without reservation that the election of McCain/ Palin would be an absolute disaster for the advancement of disability rights.
For all the big talk the last few days, the most vital programs for those with disabilities have had funding reduced with careless and heartless conviction and these candidates either supported or voted for those cuts.
This ticket has shown not a shred of promise for change in the policies which have denigrated human rights in historic and tragic proportions.
September 4th, 2008 at 11:20 am
She is on the same ticket as McCain, who has consistently resisted supporting the Community Choice Act. In the past 7 and a half years, the funding for programs that assist my cousin, an adult with developmental disabilities, have been drastically cut, to the point where he has to pay for the privilege of working. As such cuts were taking place, what did Palin have to say? Apparently nothing, though it looks like she did slash special education funding by about 60%. Not a very good track record, if true. So she has a special needs child now. She also seems to me insulated from carrying any of the burden of those special needs, and if she becomes vice-president, she will be even more insulated. I’m sure, if you’ve already got the money to provide for health care and education, she will support tax breaks for you, which is also McCain’s stance. If you don’t have money, it is likely you will be allowed to twist in the wind.
September 4th, 2008 at 11:02 am
I’m processing all the words I’m reading about Governor Palin and baby Trig, and am thinking we are missing a vital point here.
Of course it is wonderful that she “kept” her baby, and this decision will hopefully be both thought and action provoking for others in the future; but even though she has said she will be “a friend and advocate” in government for families with children with disabilities, from what I have also read, she would cut programs that would help those very families if ever given the power to do so.
Everyone is gushing about her “choice” to keep the baby, but with her very vocal pro-life stance, how could she have done otherwise? Does that make this a such a noteworthy event, or something that families choose to do every day, including many who would not label themselves as “anti-abortion”? I’d rather hear someone from the so-called “pro-choice” side, and there are plenty, who kept their babies and are now advocating strongly for their welfare.
I also find it pretty hypocritical that the “religious right” are thrilled that her daughter and boyfriend are keeping their baby and getting married, when they would be the ones bashing them for not practicing abstinence if her mother were not the VP nominee.
Governor Palin has become the new rallying cry for Pro-Life, and if fewer babies with Down syndrome are aborted as a result of her story, that’s GREAT. I just don’t think she is the right person for this “poster child” position.
September 4th, 2008 at 10:59 am
I think both Palin’s rhetoric and Trig’s presence raises the visibility of people with special needs and their families, and I think that is worth something all by itself. It would be nice if it was followed up by actual policy and activism. But right now, I’m happy to get a shout-out in a highly anticipated speech viewed by millions of people.
September 4th, 2008 at 10:58 am
To my knowledge, Palin has never advocated on behalf of disabled people or children that have Down Syndrome. I cannot in any way consider her an advocate based on one speech that was short of facts and filled with rhetoric. She and her son Trig will indeed generate media exposure but I am not convinced this is a good thing. I see her selection as a political ploy to appease right wing Christians and pro life zealots. I also think McCain selected her to negate the age disparity between him and Obama.
September 4th, 2008 at 10:29 am
I agree that any publicity is better than no publicity. The disabled community suffers most when it is ignored. This is an opportunity for people with disabilities and their advocates to speak up about what we need from government, on both a human and a policy level, now that the subject is front and center in the campaign. I feel concern for all of Gov. Palin’s family — they each have that deer in the headlight look about them, but that is not something I can do anything about.