Denying a life-saving kidney transplant to a child is not something that we accept as Americans. We go through great lengths to protect our children, and take extraordinary measures to help a child facing a life or death situation. This is part of our value system.
But values can be fragile things. Sometimes when we are not paying attention they can be undermined. Sometimes they can be unintentionally compromised by something as simple as a single word. Early last year, when she was three years old, Amelia Rivera needed such life-saving transplant, but doctors gave Amelia and her parents bad news — she would not be considered for the operation.
This is where the power of a single word becomes so important. Amelia’s mother, Chrissy, recounts the conversation with the doctor in January of 2012 in a blog post. As the doctor began to explain that Amelia would be denied the chance for a transplant, Chrissy recalls noticing highlights on the doctor’s notes — the phrase “mentally retarded” was peppered throughout Amelia’s paperwork. Retarded, the R-word.
The ensuing conversation led to a pointed question, “This phrase. This word. This is why she can’t have the transplant done?”
Followed by the crushing response, “Yes.”
Medical decisions are always complex. And yet Amelia’s hope for a kidney transplant was not denied for any scientific reason, it was denied because of the power of a single word, the R-word, and all of the connotations it carried with it in regard to creating arbitrary perceptions of what defines “quality of life.”
Fortunately, doctors eventually reversed the decision and granted her the operation, but only after her family fought back and support for Amelia from people all over the world flooded the hospital where she was being treated. Now, Amelia is doing well and will get her new kidney this spring.
In the historical context, the medical profession has made great strides in treating people with disabilities. A century ago, the technical term for a child like Amelia would have been “imbecile” and even without a kidney issue, she would have almost certainly died in early childhood. Fifty years ago, health professionals would have institutionalized and likely sterilized her in a misguided attempt to prevent her from passing on her “feeble-mindedness.”
Today, people with intellectual disabilities live in the community and well into adulthood, but as Amelia shows us, they are still not treated like everyone else. Even when the issue is not immediately life-threatening like organ failure, they face dramatic discrimination in access to medical services leading to poorer health, diminished lives and premature death.
As head of the American Academy of Developmental Medicine and Dentistry, I have been honored to join Special Olympics for years as its staff, volunteers, families, and supporters has worked tirelessly to push for policy changes. We have had some critical recent steps in the right direction.
- At its annual meeting in 2012, the American Medical Association agreed to stop using the term “mental retardation” in its policies — and at the same time, supported a process for government agencies to designate individuals with intellectual disabilities as a medically underserved population.
- Just a couple weeks ago, The Social Security Administration announced its intention to make the same language change.
- In May 2013, the American Psychiatric Association will publish the new DSM-5 (Diagnostic and Statistical Manual — 5th edition). In it, the diagnosis of mental retardation is revised to intellectual disability (intellectual developmental disorder).
No one believes that if the R-word vanished, access to the best health care will suddenly appear and the medical problems faced by people with intellectual disabilities magically fixed, but language affects attitudes, and attitudes affect action. If health care professionals looked at the person first rather than the disability, there would be no questions whether that patient should receive an organ transplant, proper instruction on nutrition, or complete dental care. Some would argue that it is only a word or only a clinical designation, but equality in health won’t come while we are still categorizing people in derogatory terms and using that as the basis for unequal care.
That is why words matter.
Amelia’s mother Chrissy says it best. “To our family, [the R-word] was the equivalent of a death sentence, and all of us hope it can be erased from society.”
ETA: Since it’s related, I’d like to remind everyone that this applies not just to people with intellectual disabilities, but people with developmental disabilities as well. Case in point: this incident where an autistic man was denied a heart transplant at UPenn because he’s autistic.
As discussion of the Obama health care law heats up again, now that the primary seems decided for the Republicans, I thought I’d throw out a piece of information that not a lot of people appear to know, but that seems relevant to the issue:
Have you ever wondered why you get health care benefits from your employer, rather than buying them on your own (like you do your house and your car) or getting them as part of a national package of benefits (like pretty much every industrial/postindustrial democracy other than the United States)? It turns out the answer is an accident of history.
Prior to WWII, basically no one had a health care benefit plan in America. If you got sick, you paid your bill out of your savings and earnings. In rural areas, doctors took barter—the infamous chicken, for example. After all, there wasn’t all that much doctors and hospitals could do for you in the days before penicillin, and you weren’t going to linger for weeks and months in a hospital before you died. Paying for care was “manageable,” to use that loaded term.
That changed during WWII. As men got drafted in their millions, vast labor shortages broke out across the nation—at exactly the time labor needs increased to produce the weapons of war. In part, the labor shortage was met by the infusion of women into the paid workforce, but regardless of women’s contributions to the labor pool, labor shortages were endemic throughout the war.
Elementary economic theory notes that anything scarce tends to go up in price; the same is true for labor. When labor is scarce, employers seeking workers raise their salary offerings to attract labor from other jobs.
However, in WWII wages were frozen. Employers couldn’t compete for labor with salaries. So they competed on benefits—including, notably, health care benefits. They couldn’t pay you more directly, so they gave you more indirectly.
The principle of employer-provided health care benefits stuck after WWII. Unions negotiated generous packages; white collar workers wanted at least as much; and the modern system of employer-provided health care benefits became the established norm—just a few decades after a time when no one would have had any health care benefits at all.
Note that this was never the case in the rest of the industrial/post-industrial democracies.They decided to make national health care benefits part of their national mission after WWII because just as they had borne the suffering of the war together, they believed it was right to provide care in a collective, state-centric way. Hence they built national, non-profit health care systems, not employer-derived, for-profit systems.
In the US, of course, we now live in a world where there is so much health care, and that health care is so expensive, that we are frightened of living as my grandparents basically did, and my great-grandparents certainly did: paying for our own medical care on an as-needed, fee-for-service basis. Instead, as an accident of history, we are all just a job loss or poor job opportunity away from being without good insurance for health care. Which ought to scare pretty much, well, everyone in the United States.
Make No Mistake:
The Republican Party has declared War on American Women.
The only path forward for our nation is the UTTER DESTRUCTION
of this Republican Party.
November 6, 2012 → OCCUPY A VOTING BOOTH
bring your wives, girlfriends, mothers, grandmothers, daughters, granddaughters, sisters, aunts, and nieces
*not just cis women
But besides that, fuck yes. I’m voting for the first time this November, and you bet your ass I’m voting against the party who’s trying to make me a second-class in every way they can, as a cis woman and as a bisexual person.
oh we’re still using “occupy”? ‘kay.
Corporations Are People. Women, Not So Much
Author’s note: Are we seriously at a point where we are going to let a company CEO, based upon his or her own religious views, to decide whether to cover basic contraception for all the many and diverse women in his or her employ? Sigh. Apparently so.
From the Democratic Senatorial Campaign Committee:
“2011 is almost over, and that means everyone’s making Top 10 lists. I decided to get in on the action too. Here’s my compilation of the 10 Worst Republican Actions of 2011.
Which do you think is the worst? Click here to vote:
- Bring Back “Pre-Existing Conditions”: Health care reform is one of President Obama’s signature achievements. No longer can children born with health conditions be denied insurance. No longer can insurance companies deny care for “pre-existing conditions.” About 2.5 million young adults who lacked health insurance now are covered by their families’ plans. So what did Republicans do? Try to repeal “Obamacare” and put control back in the hands of insurance companies.
- Kick Grandma Off Medicare & Give Her a Coupon: Republicans all lined up in favor of Republican Rep. Paul Ryan’s extreme budget plan earlier this year that would kill Medicare as we know it and turn it into a voucher program. Thank goodness the Democratic Senate was there to stop them and keep our promise to seniors.
- Hand Over Cash to Corporations and the Wealthy: Another part of Paul Ryan’s plan: Give huge tax cuts to corporations and the wealthy. While the middle class struggles to get ahead, Republicans tried to make things worse by reducing taxes on the wealthiest – and sticking everyone else with the bill.
- Rip Away Workers’ Rights: When Republicans won the governorships in Wisconsin and Ohio, among other states, one of the first things they did was go after public workers, including taking away the rights of teachers and prison guards to bargain for better pay and benefits. Bad move. They clearly overstepped their bounds, and voters will remember at the ballot box in 2012.
- Prevent You From Voting: Republicans this year decided that when it comes to elections, if you can’t beat, then cheat. From Florida to Wisconsin to Ohio, Republicans passed laws that will have the effect of suppressing Democratic turnout in these crucial swing states. The Brennan Center for Justice estimates that more than 5 million voters will be affected by these laws – a number higher than the margin of victory in the 2000 and 2004 presidential elections. Senate Democrats are holding hearings on the Florida laws in January.
- Declare War on Women: It was bad enough that Republicans tried to eliminate funding for Planned Parenthood and other family planning programs. Then they tried to change federal law to redefine rape and to allow hospitals to deny lifesaving care for pregnant women. So much for the Republican promise to have a “laser focus” on jobs. The Republican War on Women is alive and well.
- Shove Gay Soldiers Back Into the Closet: It was a huge victory for civil rights and basic human dignity when President Obama signed the repeal of Don’t Ask, Don’t Tell into law. Finally, all Americans could serve openly in the military. Or not. This year, Republicans tried to bring back the policy, and some Republican presidential candidates have said reinstituting discrimination is one of their top policy priorities.
- Launch Assaults on Sesame Street and Lake Wobegon: I don’t know what Republicans have against Big Bird and Garrison Keillor, but they will do almost anything to shut off their microphones. In fact, earlier this year, Republicans vowed to shut down the federal government if NPR and PBS weren’t defunded. Luckily, Senate Democrats were there to stop the nonsense, and “Sesame Street” and “A Prairie Home Companion” were given a reprieve – for now.
- Let Consumers Fend For Themselves: One of the most important reforms passed by Democrats in decades was the creation of the Consumer Financial Protection Bureau to prevent big banks from ripping off their customers with dangerous financial products – some of the same products that contributed to the Great Recession. But Republicans hate anything that puts customers ahead of corporations. So they’ve fought the bureau – and people chosen to lead it – tooth and nail.
- Increase Taxes for Middle Class Families. And last but certainly not least, this week House Republicans refused to support tax relief for the middle class, even as they demand it for billionaires and huge corporations. If your taxes go up next year, you’ll have nobody but Republicans to blame.
These policies and positions are simply awful — so awful, in fact, that I couldn’t choose the worst. That’s your job. Click here, vote, and tell us what you think is the No. 1 Worst Republican Actions of 2011. The Democratic Senate has been the firewall stopping most of these measures dead in their tracks. With only a four seat majority, it’s never been more important to protect the Senate.
From all of us here at the DSCC, we hope you have a wonderful holiday season and a great – and blue! – 2012.
Executive Director, DSCC”
PS: If you think this is biased, I don’t get stuff from the GOP, and I usually ignore stuff from DSCC but hey well I thought some of the shit on here is pretty awful.
My only issue with Cecil’s letter is that it paints Democrats as guardians of the people, when actually they’re not—they’re just as bought as the Republicans, but profess different beliefs than Republicans and don’t support recent horrific legislation to the extent that Republicans do. Also, politicians from both sides will often denounce legislation from each other’s sides for the sole reason that the other side brought it up, ex. a Republican turning his back on a proposal because a Democrat authored it. The battle between the parties just ends up getting construed as Good vs. Evil because America only has two main political parties, and all of the rest (as well as the interests of our nation and its people) get lost in the bipartisan shuffle.
From CREDO Action:
“In August, the Obama Administration listened to women’s rights advocates and made an historic advancement for women’s health with new regulations that require insurance coverage for birth control with no co-pays.
But President Obama may be poised to cave on this tremendous step forward for women’s health.
Extreme anti-woman forces who literally oppose contraceptives are lobbying President Obama to overturn these new regulations and block access to birth control for millions of women.
If President Obama caves to the demands of the radical anti-contraception activists, certain employers like religiously affiliated universities and hospitals will be allowed to prevent their female employees from having access to the same health care as every other woman in America.
The Department of Health and Human Services and the medical community agree that providing no-cost birth control is an essential part of preventive health care for women. And Kathleen Sebelius, the director of HHS, said that providing birth control at no cost to women should be like “covering flu shots.”1
President Obama needs to hear that women’s access to critically important health care shouldn’t be determined by who they work for.
The anti-woman lobby is small but incredibly powerful. We know that President Obama has had private meetings with influential leaders from U.S. Conference of Catholic Bishops who have been publicly pressuring him to restrict access to birth control. There is already a religious exemption that covers churches and other places of worship from offering birth control as part of health insurance. This new push to radically broaden that exemption is nothing more than a thinly veiled attack on contraception.
Now, President Obama needs to hear from the millions of women who use birth control and depend on it to keep them healthy. He should listen to the medical community and women in the U.S., not the extreme anti-woman forces lobbying him behind closed doors.
Thank you for working to protect women’s health.
Ali Rozell, Campaign Manager
CREDO Action from Working Assets
1. “New U.S. rules require insurance coverage for contraception,” N.C. Aizenman, The Washington Post, 8-1-2011.”
I’m going to post this right now at this catholic clinic i work in. Let’s see what happens, shall we?
dunno, my catholic school’s website has forms of birth control on their website and describes them and says how accurate they are.
although in your defense they don’t mention abortion.
Sexiest poster for the cause.
I’ve got nothing on the religious conversation to add here.
You have 72 hours after birth control failure or unprotected sex to prevent pregnancy. The sooner you take emergency contraception, the better it works. Plan B One-Step™ is available over the counter for consumers 17 and older.
Present this at any retail pharmacy (it can’t be used at government subsidized clinics, unfortunately) for up to two purchases of Plan B One-Step™. It’s valid for both prescription and non-prescription purchases.
Reblog so your followers can have it, too!
Signal boost for whoever needs it!