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Tuesday, September 23, 2008

Sarah Palin and Christopher Reeve: A Special Needs Parent Speaks Out

According to Sarah Palin, if John McCain is elected President, she will be put in charge of cure research.

Governor Palin states: “John and I have worked out a plan… My mission is going to be energy security and government reform. And another thing near and dear to my heart, it’s going to be helping families who have special needs and children with special needs. And we’re going to be pushing for innovative cures of diseases.”

*Innovative cures? Special needs families? As far as I know, Governor Palin’s only background in either area is that she opposes embryonic stem cell research-- and that she has a six-month old baby with Down’s Syndrome.

At age 44, Ms. Palin chose to have a fifth child. When she found out the unborn child had Down’s Syndrome, she chose to continue with the pregnancy.

Fair enough. Those were her choices, and choice is important for every woman.

But does she have any knowledge of the real world of special needs families?

Right now, her baby requires only normal infant care: to be fed and changed and loved. When the “special needs” part of his life begins, Governor Palin’s income level will allow her to hire nannies and servants to care for her child.

Most of us do not have Ms. Palin’s advantages. For millions of American families, having a “special needs” member (a mentally or physically disabled person, old or young) means exhausting physical labors of care-giving, endless emotional stress, and bills we cannot afford.

At the age of nineteen, my son Roman Reed broke his neck in a college football accident. He was paralyzed from the shoulders down. The doctors gave us no hope: Roman would never walk again, they said: never close his fingers, probably never father a child; and, due to his shortened life expectancy, his mother Gloria and I might outlive our own son.

Before this happened, if I saw a person in a wheelchair, I never stopped to think how they got there. Who lifted them out of bed in the morning, helped them take a shower? Did they need assistance to use the rest room, to get dressed? Could they breathe on their own? If not, who changes the battery in their respirator? Who helps them turn over in bed during the night? Will she or he need to be institutionalized? If so, who will pay?

Many families break up under this stress. John McCain, for example, divorced his first wife when she became disabled.

If Ms. Palin truly wanted to be the “friend and advocate of special needs families”, as she so perkily promised at the Republican Convention, she could begin by opposing John McCain’s negative position on the Community Choice Act, which he says we cannot afford. The Community Choice Act would allow people with disabilities to receive government assistance at home, with their families, instead of being institutionalized.

We do know Ms. Palin is in favor of government assistance, at least for herself, as she personally requested and received more than three hundred days travel pay (per diem) even though she was not actually traveling on those days.

In addition to care for special needs individuals, America must work for cures.

My family knows about this, up close and personal. California passed a law named after our son, the Roman Reed Spinal Cord Injury Research Act of 1999. It is just a small law, one and a half million dollars a year—but it made possible the nation’s first state-funded embryonic stem cell research.

On March 1, 2002 , opening day of the Roman Reed Laboratory at UC Irvine, I held in my hand a laboratory rat which had been paralyzed, but which now walked again-- and this while my son watched from his wheelchair.

The experiment was so successful that Geron Corporation funded further work on it, taking it all the way to the Food and Drug Administration, where it is currently being considered for human trials. If all goes well, newly paralyzed people may one day have the chance my son did not—to walk out of the hospital, instead of being condemned to a wheelchair for life.

Far more importantly, California voters passed a magnificent stem cell research program, to fund the science President George Bush so cruelly restricted.

And it was our son who suggested the official motto for that program, the California Institute for Regenerative Medicine, (CIRM): “Turning stem cells into cures.”

Today, we have hope. But it would all be swept away by Sarah Palin.

Embryonic stem cell research would quite literally become against the law if Sara Palin and the GOP get their way. The official Republican platform calls for the complete prohibition of embryonic stem cell research, both public and private; even George Bush did not take such an extreme position.

Not only paralysis cure is at risk. We are fighting for relief from cancer, which killed my mother and older sister. Embryonic stem cell research is crucial in the battle against Alzheimer’s, multiple sclerosis, stroke, diabetes, blindness—and Down’s Syndrome. In England , where the government supports it, embryonic stem cell research led to a clearer understanding of the causes of Down’s Syndrome, an important step towards cure.

Which brings us to another choice for Sarah Palin—when cure does come, will she allow her son to become well?

She might say no. There are people who do not accept medical treatment for religious reasons. X-rays were originally frowned on by some, because it was thought they might be used to see through women’s clothing. Others said chicken pox was God’s punishment for sin, and it was wrong to develop a vaccine to cure it. Even today folks may refuse blood transfusions; others believe in the power of healing by faith alone-- as is their right.

But should religion be allowed to block my son’s chances to walk again?

American families deserve access to the best care science can provide: to ease suffering and save the lives of our children, our brothers and sisters, and our neighbors too.

Our country has an estimated one hundred million citizens with incurable disease or disability. These are not just empty statistics, but our loved ones, members of your family and mine. They are the reason America supports stem cell research.

Also, we are plain common sense practical. We see the results of too many people not getting well. Last year, America spent $2 trillion dollars on health care—a mountain of money, more than all federal income taxes put together. Three-fourths of that went to the maintenance of people with chronic disease or disability, who will never be healed: except, perhaps, with stem cell research.

If we want affordable health care, we must support cure research.

We will not be tricked into believing there are alternatives to embryonic stem cells that are just as good. Those arguments have been made for years. They were not true then, and they are not true now. If there is a cure for paralysis, fine: show it to me. But until then, politicians should not insult my intelligence by pretending those cures exist.

To understand what an extreme position Sarah Palin and the Republican Party are taking on stem cell research, we need only compare the lists of groups who argued about a simple bipartisan bill expanding President Bush’s restrictive embryonic stem cell research policies: the Stem Cell Research Expansion Act (Castle,DeGette).

First, how many groups opposed the relaxation of restrictions? Seventeen. That’s right, seventeen: and every one was a conservative religious and/or ideological organization.

How many groups supported embryonic stem cell research? Five hundred and eighteen: every major scientific, educational, medical or patient rights group that took a position on the issue, including the American Medical Association.

I do not think Ms. Palin has a lot of scientific background.

For example, as Governor of Alaska, she wanted to spend several million dollars of taxpayer money killing wolves, shooting them from airplanes, figuring that would result in more moose for human hunters to kill. As wolves actually protect the moose population by killing the weak and sick, thereby preventing the spread of disease, Palin’s plan to wipe out natural predators does not make a great deal of sense.

But her wolf-slaughter policy does remind me of something a farmer once said.

A fox in the henhouse will kill a chicken, he said, maybe take one along to eat later.

But a weasel will go blood crazy-- and kill every chicken in the coop.

John McCain says he supports embryonic stem cell research. But to please the anti-science wing of his party, he would let an enemy of the research have influence over it.

Giving Sarah Palin power over research, is like tossing a weasel in the henhouse-- and pretending it will only supervise.

Enough. As Barrack Obama said, in a one-word rejection of failed policies: enough.

I am tired of a White House which does not reflect my hopes for a better America . I want a President who will work on the problems with the idea of really solving them, not just smiling and waving at us from a platform.

And one thing more. I want to see the fulfillment of Christopher Reeve’s great dream. Years ago, our local school did a fundraiser for the paralyzed Superman. I wrote a play, and the kids in my multicultural club (True Colors) produced it, giving up their lunchtime all year to make it happen. We put on the play, charged admission, and sent $2,000 to the Christopher Reeve Paralysis Foundation. It wasn’t much, but it came from the heart, and Superman responded.

In a dictated letter our family will always treasure, Christopher Reeve said:

“One day, Roman and I will rise up from our wheelchairs, and walk away from them forever.”

Cure did not come in time for Christopher Reeve. Our champion has fallen. But the flame of his faith still lights our way. Barack Obama has taken up the torch of scientific freedom, the power that lifted us to the moon, and accepts no limitations.

America will prevail.

Don C. Reed Sponsor, Roman Reed Spinal Cord Injury Research Act Founder and Co-Chair, Californians for Cures Don Reed is also Vice President of Public Policy for Americans for Cures Foundation; opinions voiced here as an individual may or may not reflect those of the Foundation.



Mark Miller said...

Great post. See more at http://specialneeds08.blogspot.com

Anonymous said...

I felt compelled to comment here. I have been struggling with my feelings about this subject for several years. I am a parent of child who severely visually impaired. I also consider myself a person with strong conservative, republican values. People often ask me what I think about stem cells, knowing my political views. Well, just like everything else, I can't make my decision on one issue. And as a parent of a special needs child, I was surprised to find the author of this article (Palin/Reeves) to be belittling Sarah Palins experience as a parent with a special needs child. You don't think she feels the same pain and loss? That she doesn't question her own past views on stem cell research? Just because she may have a nanny, she isn't experiencing all the same overwhelment that we have? That's not fair. We all struggle with shake up's to things we once were so sure of. For instance, when I was younger, I was pro-choice. And I thought no male-dominated government should be able to tell a woman what she can or cannot do with her own body. But now, that I am a mother of 2, I am pro-life. I changed. For those parents with special needs children diagnosed at birth, or shortly thereafter, I'm sure your whole world and core was shaken. You look at the world differently than you once did. As for Governor Palin, her child is still so young and they must still be dealing with this whole new world with their child. You can't know for sure what will happen.
With all that said, going back to what I said before about not allowing this one issue to drive my decisions. You might think Obama is the right choice for this issue, but I think we need to consider the big picture. I can't get past the man's poor judgment in the people/friends he associates with. How can I vote for a man for president who is friends with a known terrorist (Ayers) or someone who attends a churuch that preaches such hate and discontent for others and our country? Do I believe this man will make the right choices for my child's future? For me, our national security, for instance is a much bigger issue. If our country is led down a more liberal, socialistic path, then the future will never look as bright for my young child. Do you think a socialized healthcare system will benefit your special needs child? Or when/if "cures" are found, will they be available? Socialized healthcare is a horrible idea. I can't believe that come January 2009, when McCain & Palin get into office that they would say "Stop all stem cell research." That's not going to happen. Science will move forward. Consider Mayor Guiliani. He is pro-choice, but never did anything while in office to affect NY law on the issue. That was just his personal belief. Palin may not believe in embroyonic stem cell research, but it does not mean that she would halt or prohibit it. Especially int he private sector. Regulating the private sector is not a republican agenda to begin with.
So, in the end, I know I will continue to struggle on my feelings with the issue. My 2 main points here were 1) please don't belittle Governor Palin's experience as a mother of a special needs child. She feels the pain like all of us have. We are all part of that special community. We should support each other. And 2) please just think of the long term future of our country and making this a better place for our children. Honestly, do we really think that either party will really make a difference in our lives? I think we've all been a little disenchanted with our politicians on both sides lately. We can only pray, and know that the only people who can truly make a difference in our children's lives are us parents.

Don said...

The author has strong opinions on many subjects, and I wish her well.

On Sarah Palin's fitness for the Presidency, by reason of her complete opposition to research I beliveve will help my son and millions across America and the earth, we disagree 100%.

While I do not normally discuss my religious beliefs, believing such matters to be private, I will say that I believe God gave us a heart to care and mind to make things better, and that is why I support embryonic stem cell research.