Special-needs and choice

TheRealistMom

The "what might have been" and what one mother might have chosen.

On the site of late there have been a great many posts and debates in regards to what is "ethical" in regards to the reasons a woman might not choose to continue her pregnancy. Being firmly pro-choice, the reasons, for me, generally do not matter except to work to ensure that some of the reasons that are negative to women and families are addressed. Reasons such as domestic violence, poverty, lack of education or access to contraception are in dire need of attention- but in the end what matters is that the woman still has the right to decide if she wishes to continue a pregnancy or not.

 One of the reasons a woman might choose to abort a wanted pregnancy that seems to come under fire a great deal is if there is fetal defect. With the advancements in prenatal testing  the date of finding out there may be a serious issue has been pushed back- but so has the time that a fetus might be considered viable with medical advancements. Many conditions that might not have been treatable in years past have a better outlook, yet there may be less of a chance for births of children with these conditions to take place since advance knowledge may lead to the pregnancy being terminated.  So therein lay the conundrums of what conditions are "severe" enough to be "accepted" as reasons to abort. People melodramatically cry out strawmen of eugenics and playing god, but why should anyone have to justify their decision? Why, indeed.

 Even fourteen years ago when I was pregnant with my second child prenatal testing was nowhere near the accuracy of today. As a twenty-three year old woman with one healthy child already there was no reason for me  to have an alpha fetal protein test; there was a high rate of false-positives and the risks involved in a later amniocentesis at the time were greater than the chances of there being something detectably wrong. So it was when my daughter who is now thirteen was born with Down syndrome it was a complete and total shock. (I suspect, however, the military hospital where I had prenatal care suspected something, nuchal fold measurements were taken more than once, something I now know to be a marker for trisomy 21.) An Air Force colonel wearing BDU’s beneath his lab coat dropped the news to me like an atomic bomb.

I wished my child had been stillborn. I thought about giving her up for adoption if my then-husband agreed. What did we know about trisomy 21? These are the things they don’t talk about when people gloss over reality by talking about "trips to Holland" and "god giving special children to special people." I sure as hell didn’t feel special. I felt betrayed, angry. I mourned the loss of the child that could have been, and still do. I can’t imagine what it is like for someone to lose a child, and I would never demean their grief by saying they can "get over it" or "move on". Yet every day in the back of my mind that mourning is still there, because I know my beautiful little girl will never have the same opportunities that a "normal" child would. There is no "moving on". There is acceptance, and love for the child you have. There is advocacy and trying to live a normal life.

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 The thing is, these feelings are the norm for parents of disabled children. It’s just not spoken of. We’re supposed to have this united front, this smile and acceptance of what life has thrown our way. We’re supposed to pretend to the outside world  that we never would have wanted anything different for our children. Pardon the French, but bullshit. If I could "take it back" somehow, I would. Nature, in its wisdom, doesn’t intend for conceptions with trisomy to survive. Most embryos with chromosomal anomalies are shed. Trisomy 21, or Down syndrome, is pretty much the only survivable triplicate chromosomal disorder  with the exception of sex chromosome duplicates. It is estimated that probably 2/3 or more  of conceptions with trisomy 21 are miscarried. 

I love my daughter with every fiber of my being. Yet I cannot say that had I it all to over again, had I known of the Down syndrome, that I would have continued the pregnancy that resulted in her birth. This outlook doesn’t win me favors in a lot of DS communities, but it is reality. If someone like me who has a disabled child can say they would not have chosen this experience, after having our wonderful children, how the hell can we EVER condemn a woman who knows she is unable to take on this burden for herself before there is even a child brought into the world? How "bad" does it have to be for it to be "ok" for her to recognize that she cannot cor will not be able to deal with this reality?

I know to many this will sound terribly selfish. Perhaps it is in some ways. But it is also humanitarian in others. When I was pregnant with my third child, there was a chance he had a chromosomal disorder- trisomy 18. This is a disorder incompatible with life. Most fetuses die in utero; if not, ninety percent of those that make it to term die within a month of birth. They do not attain any meaningful consciousness. Would this have been "bad" enough to warrant a late term abortion? I was prepared for this when I awaited the results of the amniocentesis. Would it have been better for me to birth a child that had no chance to live, for my other children to have a brother who would die?

I’ve rambled on I’m sure, and deviated from the original point, or perhaps not. The thing is, none of us have the ability to know what is going on in any woman’s head when she makes her choices. None of us have the ability or right to decide what she can or cannot endure, or what constitutes quality of life.  Nobody can step into her shoes and decide if her reasons are "good enough", or if it is "right" or "wrong" to make a decision based on her perceptions are for the fetus’ later life. I love my daughter… but I would love for her to have a chance for a normal existence as well.

News Sexual Health

State with Nation’s Highest Chlamydia Rate Enacts New Restrictions on Sex Ed

Nicole Knight Shine

By requiring sexual education instructors to be certified teachers, the Alaska legislature is targeting Planned Parenthood, which is the largest nonprofit provider of such educational services in the state.

Alaska is imposing a new hurdle on comprehensive sexual health education with a law restricting schools to only hiring certificated school teachers to teach or supervise sex ed classes.

The broad and controversial education bill, HB 156, became law Thursday night without the signature of Gov. Bill Walker, a former Republican who switched his party affiliation to Independent in 2014. HB 156 requires school boards to vet and approve sex ed materials and instructors, making sex ed the “most scrutinized subject in the state,” according to reproductive health advocates.

Republicans hold large majorities in both chambers of Alaska’s legislature.

Championing the restrictions was state Sen. Mike Dunleavy (R-Wasilla), who called sexuality a “new concept” during a Senate Education Committee meeting in April. Dunleavy added the restrictions to HB 156 after the failure of an earlier measure that barred abortion providers—meaning Planned Parenthood—from teaching sex ed.

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Dunleavy has long targeted Planned Parenthood, the state’s largest nonprofit provider of sexual health education, calling its instruction “indoctrination.”

Meanwhile, advocates argue that evidence-based health education is sorely needed in a state that reported 787.5 cases of chlamydia per 100,000 people in 2014—the nation’s highest rate, according to the Centers for Disease Control and Prevention’s Surveillance Survey for that year.

Alaska’s teen pregnancy rate is higher than the national average.

The governor in a statement described his decision as a “very close call.”

“Given that this bill will have a broad and wide-ranging effect on education statewide, I have decided to allow HB 156 to become law without my signature,” Walker said.

Teachers, parents, and advocates had urged Walker to veto HB 156. Alaska’s 2016 Teacher of the Year, Amy Jo Meiners, took to Twitter following Walker’s announcement, writing, as reported by Juneau Empire, “This will cause such a burden on teachers [and] our partners in health education, including parents [and] health [professionals].”

An Anchorage parent and grandparent described her opposition to the bill in an op-ed, writing, “There is no doubt that HB 156 is designed to make it harder to access real sexual health education …. Although our state faces its largest budget crisis in history, certain members of the Legislature spent a lot of time worrying that teenagers are receiving information about their own bodies.”

Jessica Cler, Alaska public affairs manager with Planned Parenthood Votes Northwest and Hawaii, called Walker’s decision a “crushing blow for comprehensive and medically accurate sexual health education” in a statement.

She added that Walker’s “lack of action today has put the education of thousands of teens in Alaska at risk. This is designed to do one thing: Block students from accessing the sex education they need on safe sex and healthy relationships.”

The law follows the 2016 Legislative Round-up released this week by advocacy group Sexuality Information and Education Council of the United States. The report found that 63 percent of bills this year sought to improve sex ed, but more than a quarter undermined student rights or the quality of instruction by various means, including “promoting misinformation and an anti-abortion agenda.”

Roundups Politics

Campaign Week in Review: ‘If You Don’t Vote … You Are Trifling’

Ally Boguhn

The chair of the Democratic National Convention (DNC) this week blasted those who sit out on Election Day, and mothers who lost children to gun violence were given a platform at the party's convention.

The chair of the Democratic National Convention (DNC) this week blasted those who sit out on Election Day, and mothers who lost children to gun violence were given a platform at the party’s convention.

DNC Chair Marcia Fudge: “If You Don’t Vote, You Are Ungrateful, You Are Lazy, and You Are Trifling”

The chair of the 2016 Democratic National Convention, Rep. Marcia Fudge (D-OH), criticized those who choose to sit out the election while speaking on the final day of the convention.

“If you want a decent education for your children, you had better vote,” Fudge told the party’s women’s caucus, which had convened to discuss what is at stake for women and reproductive health and rights this election season.

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“If you want to make sure that hungry children are fed, you had better vote,” said Fudge. “If you want to be sure that all the women who survive solely on Social Security will not go into poverty immediately, you had better vote.”

“And if you don’t vote, let me tell you something, there is no excuse for you. If you don’t vote, you don’t count,” she said.

“So as I leave, I’m just going to say this to you. You tell them I said it, and I’m not hesitant about it. If you don’t vote, you are ungrateful, you are lazy, and you are trifling.”

The congresswoman’s website notes that she represents a state where some legislators have “attempted to suppress voting by certain populations” by pushing voting restrictions that “hit vulnerable communities the hardest.”

Ohio has recently made headlines for enacting changes that would make it harder to vote, including rolling back the state’s early voting period and purging its voter rolls of those who have not voted for six years.

Fudge, however, has worked to expand access to voting by co-sponsoring the federal Voting Rights Amendment Act, which would restore the protections of the Voting Rights Act that were stripped by the Supreme Court in Shelby County v. Holder.

“Mothers of the Movement” Take the National Spotlight

In July 2015, the Waller County Sheriff’s Office released a statement that 28-year-old Sandra Bland had been found dead in her jail cell that morning due to “what appears to be self-asphyxiation.” Though police attempted to paint the death a suicide, Bland’s family has denied that she would have ended her own life given that she had just secured a new job and had not displayed any suicidal tendencies.

Bland’s death sparked national outcry from activists who demanded an investigation, and inspired the hashtag #SayHerName to draw attention to the deaths of Black women who died at the hands of police.

Tuesday night at the DNC, Bland’s mother, Geneva Reed-Veal, and a group of other Black women who have lost children to gun violence, in police custody, or at the hands of police—the “Mothers of the Movement”—told the country why the deaths of their children should matter to voters. They offered their support to Democratic nominee Hillary Clinton during a speech at the convention.

“One year ago yesterday, I lived the worst nightmare anyone could imagine. I watched as my daughter was lowered into the ground in a coffin,” said Geneva Reed-Veal.

“Six other women have died in custody that same month: Kindra Chapman, Alexis McGovern, Sarah Lee Circle Bear, Raynette Turner, Ralkina Jones, and Joyce Curnell. So many of our children are gone, but they are not forgotten,” she continued. 

“You don’t stop being a mom when your child dies,” said Lucia McBath, the mother of Jordan Davis. “His life ended the day that he was shot and killed for playing loud music. But my job as his mother didn’t.” 

McBath said that though she had lost her son, she continued to work to protect his legacy. “We’re going to keep telling our children’s stories and we’re urging you to say their names,” she said. “And we’re also going to keep using our voices and our votes to support leaders, like Hillary Clinton, who will help us protect one another so that this club of heartbroken mothers stops growing.” 

Sybrina Fulton, the mother of Trayvon Martin, called herself “an unwilling participant in this movement,” noting that she “would not have signed up for this, [nor would] any other mother that’s standing here with me today.” 

“But I am here today for my son, Trayvon Martin, who is in heaven, and … his brother, Jahvaris Fulton, who is still here on Earth,” Fulton said. “I did not want this spotlight. But I will do everything I can to focus some of this light on the pain of a path out of the darkness.”

What Else We’re Reading

Renee Bracey Sherman explained in Glamour why Democratic vice presidential nominee Tim Kaine’s position on abortion scares her.

NARAL’s Ilyse Hogue told Cosmopolitan why she shared her abortion story on stage at the DNC.

Lilly Workneh, the Huffington Post’s Black Voices senior editor, explained how the DNC was “powered by a bevy of remarkable black women.”

Rebecca Traister wrote about how Clinton’s historic nomination puts the Democratic nominee “one step closer to making the impossible possible.”

Rewire attended a Democrats for Life of America event while in Philadelphia for the convention and fact-checked the group’s executive director.

A woman may have finally clinched the nomination for a major political party, but Judith Warner in Politico Magazine took on whether the “glass ceiling” has really been cracked for women in politics.

With Clinton’s nomination, “Dozens of other women across the country, in interviews at their offices or alongside their children, also said they felt on the cusp of a major, collective step forward,” reported Jodi Kantor for the New York Times.

According to Philly.com, Philadelphia’s Maternity Care Coalition staffed “eight curtained breast-feeding stalls on site [at the DNC], complete with comfy chairs, side tables, and electrical outlets.” Republicans reportedly offered similar accommodations at their convention the week before.