The Backlash Continues, Part 2

It's ironic that by trying to connect with people dealing with special needs, McCain pissed off so many of them.

Christy Everett explains why she was offended in her blog post, "I Know Nothing About Special Needs." She explains, "Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son. I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child. For McCain to say that Sarah Palin 'understands special needs better than almost any American I know' just shows how out of touch he is with the disability community."

Christy is not just another parent living with the challenges of raising a child with special needs. She's a dedicated advocate who happens to live in that state "up north," as Gov. Palin like to say -- Alaska. In an emotional blog post back on Sept. 13, she reflected on her multiple meetings with Palin to advocate for funding to eliminate the long waiting list of nearly 1,000 Alaskans with developmental disabilities who are in need of treatment. She said she cried when she heard Palin announce at the Republican Convention that she would be an advocate for children.

But then she continues: "And now that the crowd has dispersed and the lights have been turned down, I find myself wondering how you could make this pledge when so many Alaskan families wait for the support they need. Especially with a state budget with billions of dollars in surplus. I know disabilities is not a mainstream issue. Not nearly as hot a topic as soaring prices at the pump. And so you pay each Alaskan an energy rebate, a one-time check of a little over a thousand dollars. I hope the big-screen TVs are worth it."

Since the time she wrote this, her opinion of Palin has continued to sink. Not surprisingly, Christy is among a large number of Alaskans, special-needs parents, and advocates who are voting for Sen. Obama.

Mom Says McCain-Palin Approach Will Devastate Families

In the Beacon Broadside, Penny Wolfson talks about the challenges her family has met while raising their son with muscular dystrophy, who is now 24. Wolfson teaches creative writing at Sarah Lawrence College, and I highly recommend reading her entire essay. In brief, she says, Gov. Palin "does not represent my interests, she will, I believe make it harder and more costly than ever to care for a child with a disability." Why is that?

"In the society McCain and Palin wish to create, in which entitlement programs like Medicaid and Social Security are further whittled down, health insurance is more and more in the hands of private insurers, and deregulation continues apace, the picture for disabled children and their parents could only get worse. No matter what Palin might say about her advocacy for 'special needs' children, I have no doubt that her everyone-for-himself notions will prevail. I certainly hope Palin and her husband have plenty of time to fill out forms and make phone calls pleading Trig's cause to petty administrators; anyone with a disabled person in their family can tell you this is the substance of our daily lives.

"Private insurers want to make as much money and avoid any costs they can; they hate people like us, who have what must seem to them like an endless need for such essential items as wheelchairs, ventilator masks, home health aides, and psychological services. So they spend all their time and money fighting us, rejecting claims and having us call or email or get new verifications or asking us multiple times if we have another insurer. Every time my husband has changed jobs -- he is a physician himself -- we have had to fill out new forms, establish credentials, and deductibles, and re-explain Ansel's condition and needs -- all things that would be obviated by a national, single-payer system which Palin and McCain wholeheartedly reject."

More Parents Speak Out

Oregon state legislator Sara Gelser, a disability advocate and the mother of a girl with developmental disabilities, examines the candidates' records and says: "Being the parent of a child with Down syndrome does not ensure that Palin will be an effective advocate for people with disabilities, any more than Dick Cheney being the parent of a lesbian daughter has made him an effective advocate for equality." Read "Empty Promises to Desperate Parents."

Blogger Liz from Illinois writes: "I am the mother of a special needs child. Republicans want me to feel understood by Palin, to feel a symbiotic connection with her because we are both mothers of special needs children. I am supposed to instinctively trust that another mother will do right by these children. Um. Not so much. Republicans have a nasty record of not supporting legislation that funds programming, education, or health care for this vulnerable group of citizens. Why in the world would I trust Sarah Palin or John McCain to help me secure my son's future because of some touchy-feely notion that 'we mothers understand each other'?"

What's It Like to Raise a Child with Special Needs? Read This.

Especially if you do not have a child with special needs, please read this post by Margaret Storey, a history professor at DePaul University. Nothing I've previously posted better describes the emotions I've experienced raising a child with special needs. Maybe I just relate to Storey's experience because, like my daughter, her daughter is non-verbal with hard-to-control epilepsy.

She explains her mixed reactions to the nomination of Gov. Palin and notes the difference between giving birth to a child with special needs and raising that child.

"From our point of view...giving birth to a special needs child is no more God's work than having a 'normal' child....Once a child takes first breath, the responsibilities of a parent to nurture and protect take over with considerable urgency. Some undertake these responsibilities well; others do not. Sarah Palin may be a wonderful parent and have a loving family. But she has not earned the right to be regaled as exceptional simply for loving and caring for her youngest child. With the exception of those who adopt children with disabilities, parents of special needs children do not choose this 'vocation.'...

"It's true -- we aren’t like everybody else. But the difference is not a matter of heroism and sacrifice. And it's not just a matter of giving birth. It's the fact that raising a child with special needs is a life-altering experience in which one is initiated -- sometimes kicking and screaming -- into a largely unseen, or at least unacknowledged, world. Exposure to that world is fantastically transformative in terms of how one interacts with family, friends, neighbors and -- especially -- social and governmental institutions.

"Sarah Palin is currently at the beginning of this journey. She will, we suspect, soon discover that Hockey Moms have got nothing on Special Needs Moms who manage the schedules and transportation of their children: physical therapy, speech therapy, occupational therapy, primary care doctors visits, specialist doctor visits, medical tests, and on and on. As Trig grows, Sarah and Todd Palin may have to acquire arcane and specialized medical knowledge to understand and care for their son’s complex needs. Like other moms and dads, they will become experts in the health care industry as they advocate for comprehensive coverage, tests, medicines, therapies, and equipment that their child needs. And then will come school, and fighting for their child’s educational needs to be met by institutions that are underfunded and often ill-equipped to do the job....

"All that we do we do for her we do with help—and much of that help has been mandated by the often-derided 'big government.' The Americans with Disabilities Act, the Individuals with Disabilities Education Act (IDEA) that mandates fair and appropriate educations for people with disabilities, Illinois's 0-3 Early Intervention programs, the City of Chicago's grant program for housing modifications for the disabled, the non-profit foundations and organizations that provide us with resources and hope -- these programs and others like them have been put in place through the efforts of lawmakers and citizens who believe that we are all benefitted when the least of us is protected."

She concludes:
"Put your money where your mouths are, McCain-Palin. We don't need to be reminded of the 'great job' we're doing as parents of kids with special needs. We don't need 'heroes' to model sanctimonious double-talk. We need our country and its leaders to demonstrate a real commitment, not lip service, to the needs of the weakest and most vulnerable in our midst."

Alaskan Mom Says Gov. Palin Is No Friend to Special-Needs Families

I just found this comment to a post I had seen earlier, from Katy. I hope she won't mind me cross-posting it, since she wants to share this information with families who care about disabilities:

“As an Alaskan mother of a 17-year-old young man who experiences autism and hydrocephalus, and the former Director of the Alaska Parent Training and Information Center (OSEP - AK PTI), I am pleading with America to really examine Sarah’s record in Alaska. The only 'special school' that received significant increases to its budget this year is the Alaska Youth Challenge Academy, which is a military youth academy for youth with behavioral challenges.

"There have been no significant increases to early intervention services (children have to wait for months to get therapy, clearly violating IDEA), programs for children experiencing FASD have been cut, and parents in rural Alaska wait months to see therapists in the schools. Intensive needs funding has increased thanks to the brave parents who have pushed by filing complaints, NOT thanks to Sarah. To date, she has NOT been a friend or advocate for families raising exceptional children in Alaska. In fact, today Alaska is years behind in methodology and access to services compared to most states.

"It wasn’t this way when my son was a baby in the early ’90s. He didn’t have to wait for early intervention services, and I am convinced that is one the main reasons why he will be attending college in two years and studying abroad in Sweden in four."

Read the orginal post and comments: "Sarah Palin: Special Needs/Autism Advocate or Savvy Speaker?"

Christopher Reeve & Sarah Palin: A Father Makes a Case for Stem Cell Research

Stem cell research is an emotional and often divisive issue that I wasn’t going to raise until I came across this excellent post from Don Reed, sponsor of the Roman Reed Spinal Cord Injury Research Act of 1999 and founder and co-chair of Californians for Cures. The Roman Reed Act was named for his son, who at 19, broke his neck in a college football game and was paralyzed from the shoulders down.

This legislation helped created the nation's first state-funded embryonic stem cell research, and Don Reed writes: "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 Sarah 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 Syndrome. In England, where the government supports it, embryonic stem cell research led to a clearer understanding of the causes of Down Syndrome, an important step towards cure."

Reed also points out that scientists overwhelmingly support stem cell research. Just recently, inspired by Christopher Reeve's advocacy, a bipartisan bill was introduced to expand stem cell research policies. And 518 health organizations, patient advocacy groups, research universities, scientific societies, religious groups, and other interested institutions and associations supported it. On the other side, opposing the legislation, were just 17 groups -- all of them conservative religious and ideological groups. I'll list those 17 here, but for the whole list of 518, you'll need to visit Reed's blog post and scan through about 14 pages of organizations like the American Medical Association, the National Down Syndrome Association, the American Academy of Pediatrics, AARP, the ARC of the United States, and more, and more, and more.

17 opposed:
National Right to Life Committee
U.S. Conference of Catholic Bishops
Family Research Council
Christian Coalition
Concerned Women for America
Focus on the Family
Christian Medical Association
Eagle Forum
Traditional Values Coalition
Southern Baptist Convention
Susan B. Anthony List
Republican National Committee for Life
Cornerstone Policy Research
Culture of Life Foundation
Religious Freedom Coalition
Coral Ridge Ministries
Center For Reclaiming America

And now you can add to that list Gov. Palin, our potential vice president (who recently claimed that Sen. McCain would put her in charge of innovative research to find cures for diseases). I know this is a sensitive ethical issue -- but if we are serious about finding cures, I'm more inclined to listen to 518 expert organizations that do research and seek cures for a living rather than 17 religious/ideological organizations that want to impose their beliefs on the scientific community. What about you?

The GOP and the Disabled

Tom's a dad with two kids -- one with autism and Down Syndrome. I recommend his blog, "Random Thinking," and love his slogan: "The windshield was broken, but I love the fresh air."

Tom has a new post called "The GOP and the Disabled" that examines McCain's record.

Working Mom with a Child with Down Syndrome: "I Want to Shriek"

In the Phoenix New Times, Amy Silverman writes eloquently about raising three children, including one with Down Syndrome, in McCain's home state. And she explains why "As a Working Mom with a Child with Down Syndrome, Sarah Palin Makes Me Shriek." She says of her 5-year-old daughter:

"Sophie's one of the smartest kids with Down Syndrome her teachers have ever seen, but the reality is that she'll never be completely independent. And if something were to happen to me and my friends and family, Sophie would have to rely on the kindness of strangers -- namely, the government. I don't know if Sarah Palin would create a safety net strong enough to catch Sophie."

She adds: "Just last month, I met a mother with a 6-year-old son with Down Syndrome. He's pretty much never had any therapy at all; he's not speaking, he isn't potty trained. The mom gave up after someone told her there was a waiting list for services (not true) and several of her calls went unreturned. All you need to do is drive to the center of any large city in America and watch homeless schizophrenics push shopping carts to see the effects another social conservative — Ronald Reagan — had on another disenfranchised group, the country's mentally ill."

Disability Faculty: Be Afraid. Be Very Afraid.

Two distinguished professors at the University of Kansas Beach Center on Disability (and parents of a 41-year-old son who has intellectual disability, autism, and bipolar disorder), explain "Why the disability community should fear Sarah Palin." An excerpt:

"When a young governor line-item-vetoes six appropriations for community disability services or for accessibility modifications to public accommodations, that governor gives us reason to be skeptical about promises and prospective performance. When the appropriations totaled $749,000 in a state that has a huge budget surplus, and when the governor apparently knew at the time that her nephew has autism, that governor gives us special reason to doubt her commitment to people with special needs."

This is one of the best comparisons I've seen of Obama's "community organizing" and Gov. Palin's record -- and their impact on people with disabilities.

Help Me How?

A mother of twin boys with special needs writes in a letter to the Kansas City Star that she doubts Gov. Palin or Sen. McCain will do anything to improve her life.

"How is she going to be an advocate? Just because you have a child with special needs doesn’t mean you’re an advocate. I haven’t heard anything from the GOP about how they are going to make private insurance pay for therapies. It’s all about money, folks. The last thing an insurance company wants to do is pay for a therapy for a special-needs child. My husband and I have had to fight for every type of therapy. Our insurance hasn’t paid a dime, and they never will until it is a law."

People Are Asking Questions

Was Palin Patronizing Parents? A letter to the Dallas Morning News.

Would McCain/Palin Really Be Advocates for Disabilities? From the Well Alarm blog.

What's YOUR Plan, John McCain? From 411 Mania.

Is Sarah Palin Really a Friend for the Disabled? From Mother Talkers.

Experienced Mom Says Palin is No Friend to Kids & Adults with Disabilities

Writing in the Beacon Broadside, Jane Bernstein, who has written several books about raising children with special needs (and the mother of a 24-year-old with developmental disabilities), discusses the lack of services for disabled children who are no longer children.

She says, "I would like to be heartened by Palin's words, because I believe that disability is part of life. What Palin and her supporters fail to understand is that babyhood passes in an instant. If Palin truly believes that 'every baby...has potential,' she needs to spread the word that in a democracy, we care for those who need support. We do that by making sure that Medicaid funding is adequate and social services available to all who need them. Republicans have consistently cut these programs. This ticket, with Palin as vice president, has pledged to reduce government spending, and thus continue these devastating cuts. No 'friend or advocate' for those with disabilities can make these unconscionable pledges."

Read more from Jane at janebernstein.net.

Divorced, African American Mother Asks GOP: What About ME?

If you want a sense of how "regular" moms struggle to raise children, including those with special needs, you must read this post from Afrodescendiente. Read the whole thing, but here's the gist:

"Has anyone come to my house to ask me about how I balance things? I have children, I work. My oldest child is autistic. My first husband and I divorced when my children were 5 and 3. The combination of youth and autism can be devastating to a marriage. Autism (or any disability) is no walk in the park.

"So at the age of 27, I was on my own with two children. I had no job, no money, and no car. It took me six months to get straight, then I went back to college. For the first year, I had no car of my own. For the first nine months, I had no daycare for the younger child....

"Finally, I got the younger one in daycare. I was so broke...I went without books the first month of classes. My children’s schools were on different schedules, so they didn't have the same breaks and holidays. I went to school sick many times because I couldn't miss any days. I was already missing too many trying to manage when the kids were on spring break, etc.

"Once, in a three-week school period, I had 12 meetings for IEPs and other Special Ed things. And, I was still a single mother struggling to finish school. When my courses were available only at night, I had a split schedule taking classs in the mornings and evenings, so I was only home with my children for an hour or so a day, they were alseep when I returned....

"And when I was poor, struggling, bedraggled, tired did anyone rush to my defense? Nah. Did they praise me for my valiant efforts to mix parenthood and a career? I dealt with the same stigma most of us single non-white mothers deal with....

"So you know, I’m trying my best to care about Sarah Palin. I am. But you know, she has a husband and money and her kid is disabled for sure, but only for seven or so months. When she has done it for 15 years, alone with no money, THEN I will praise her. But I’m feeling sort of selfish. Until I get my parade, I can't cheer in hers."

Trampling the Weak

Marianne Leonne, whose quadriplegic child died in 2005, recently came across a shirt targeted to hockey players -- and presumably hockey moms -- that said "Trample the Weak. Hurdle the Dead." Writing in the Boston Globe, she says, "In the warrior culture espoused by self-described 'pit bull' Palin, there is no place for the weak." And the records of McCain and Palin on disabilities show they "are more likely to continue the brutal and failed Bush policies of trampling the weak and hurdling the dead."

How to Win the "Stay-At-Home-Mom" Vote

A mother of a child with autism (and another with a speech delay) advises the candidates how to win the "stay-at-home-mom" vote. "Wanna win my vote? It won't be as easy as simply nominating a 'hockey mom,' or even taking down the 'maverick' image of John McCain. But women -- and particularly mothers -- may help decide this election, and it's obvious that the McCain campaign picked Governor Palin to appeal to women like me. In order to put Barack Obama in the White House, Democrats must compete successfully for these votes."

She offers some pretty reasonable tips:
- Don't engage in mommy wars.
- Don't talk about the parenting of your opponent.
- Talk about what type of future you want for your children.
- Make the attacks about the issues, not the persona.
- Talk about the mom-economy.

A Note from a Republican Mom

I got this nice note from Barbara, the lead blogger and creator of RepublicansforObama.org:

"Thank you so much for putting this blog together. My son is profoundly handicapped, missing a chromosome. He's 7 years old, non-verbal, non-ambulatory, and with a seizure disorder. He functions at about a 9-month-old level.

"My friends (having perfectly normal, healthy kids) have been angry with me over the way I've discussed Ms. Palin and her son. They think it's totally inappropriate for me to wonder if her son is being used by the McCain campaign for political gain. But the truth of the matter is, with Trig being only 4 months old, Palin still doesn't know what it's really like to be a 'special' parent. She's never had to negotiate early intervention plans (EIPs) or independent education plans (IEPs). She still hasn't taken her kid to Wal-Mart and watched all the kids stare and the parents avoid eye contact. She's never had to fight to procure services that are denied. She's never seen first-hand how many programs have been hurt by the shift of our budget priorities toward national security.

"I have to say that I'm happy that we have disability in the national dialogue for once. But on the other hand, I think it's silly to automatically assume that a McCain-Palin administration would advocate for special needs, or, frankly, that either one of them even knows what that means. The truth is that the Republican Party's record in this arena is just awful.

"So I'm just really appreciative that there's someone else out there like me that's not afraid to tell the truth, even if all the other special-needs parents are frustrated or even horrified that we'd be willing to criticize the politics of one of our own."

Thanks, Barbara!

Sarah Palin: Lipstick or Lip Service?

Blogger Emily Elizabeth, who has a 4-year-old daughter with Down Syndrome, has written a well-crafted analysis on Gov. Palin's statements, record, and positions on issues affecting people with disabilities.

Reacting to Gov. Palin's mocking of Sen. Obama's support for government programs, Emily says, "I fail to understand how a candidate who disavows Big Government will be able to advocate successfully for the disability community -- a community that has historically lobbied for more government, not less. The disability community has spent decades trying to pass more legislation protecting the rights of those with disabilities; to create more publicly funded programs to provide support of and access to those rights; and to increase budgets allocated to self-sufficiency programs."

About Gov. Palin's promise to be a "friend" for special-needs families, Emily says, "So Sarah, if you are the pitbull in lipstick you say you are, put the lip-service away and bring it on. Because we need more than a friend. We need an advocate."

If any of the candidates want to help people with Down Syndrome, they should take a look at the National Down Syndrome Society's legislative priorities. These are the real issues and programs that need attention -- and specific plans.

Disability Advocate Weighs the Facts

This "non-politically savvy" disability advocate (and mother of a girl with physical and mental challenges) examines the candidates' positions on issues affecting children with special needs and their families.

"Families with children and/or adults with special needs would like nothing better than the government to stay out of our business, because I've witnessed some incidences where it is more of an intrusion and hurt more than helped. However, in most cases we don't come from wealthy families and need financial help. Most of us with family members with special needs are hard-working 'regular' people, who may not live in a small town, but who are willing to pull up our sleeves and do what's necessary to enhance the quality of life for our special needs children and ourselves. Yet, many of us can't work because there's not adequate and qualified day care for our children. And what about healthcare, among the many issues in this area that need addressing, one is that many of us have our own health challenges."

She concludes, "I am even more dissuaded that the Republican party has my family's interest at heart."

"Palin's Pitch to Parents of Disabled Raises Some Doubts"

From the Wall Street Journal: "Palin's Pitch to Parents Of Disabled Raises Some Doubts: Support Is Pledged, But the GOP Ticket Seeks Spending Cuts"

A Perspective from the OTHER Great White North

Canadian blogger Harold Doherty raises a point I wasn't going to make, but since he states it so well, here goes:

"...As the father of an autistic boy, I know that my wife and I have both had to devote vastly more time to his care and well-being than we do for his older brother who was able to speak, converse, read, and understand life at very early stages. I am not attacking Governor Palin, but I find it difficult to understand her decision to take on the VP nominee challenge when her Down's Syndrome child is only 4 or 5 months old. And yes, I would say the same thing if she were a man.

"...If Governor Palin would put that challenge ahead of dedication to her own young child I am very doubtful she would actually put the interests of special needs children high on her list of priorities."

And while we're on the topic, Boston Globe columnist Penelope Trunk, a successful businesswoman and mother of two special-needs children who writes on the work-life balance, says "Palin's children should take priority over being Vice President."