Ohio House Bill 214, Its Serious Implications, and Why I Can’t Support It

So this actually happened before Christmas, but deserves some comment, I think, for multiple reasons – the least of which being it got relatively little media coverage, given the GOP’s scramble in the weeks before Christmas to push tax reform through and to pass a funding bill that would prevent a government shutdown. But here it is: On December 15, the Ohio Senate passed a bill, Ohio House Bill 214, that “punishes clinicians for performing abortions that were sought specifically because of either a potential or a conclusive Down syndrome diagnosis“. They are the third state to put such legislation on the books, claiming that it will protect people with Down Syndrome.

The GOP is going about this the wrong way.  But, frankly, I’m not sure that they care.

Ohio governor (then a Republican presidential candidate) John Kasich speaks to a group of supporters during a town hall event before the Wisconsin presidential primary in Madison, Wisconsin on March 28. 2016. He is a white man with gray hair, wearing a dress shirt with black pants. He stands in front of a large American flag. Keyword: Ohio House Bil 214

Image Description: Ohio governor (then a Republican presidential candidate) John Kasich speaks to a group of supporters during a town hall event before the Wisconsin presidential primary in Madison, Wisconsin on March 28. 2016. He is a white man with gray hair, wearing a dress shirt with black pants. He stands in front of a large American flag

Content Note: Ableism, Abortion, John Kasich, Medicaid Cuts, Ohio Down Syndrome Abortion Ban, Sexual Harassment, Trump, UK Austerity Cuts

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I’ve talked in detail before about how I understand why laws like Ohio House Bill 214 seem like they  should be something that disability advocates should support as a no-brainer…and about why I don’t support them.

I know that women are routinely encouraged to abort fetuses with a Down Syndrome diagnosis.

I know that there’s a movement in support of eliminating the Down Syndrome genotype from the population.

I have loved ones who have Down Syndrome, and I’m grateful for their lives, their friendship, the contributions I see them making to their communities.

But I will never tell a woman, “Your reason for having an abortion is wrong.” It’s not my right. And I’m not the only one in the disability activist community who thinks so.

David Perry’s son has Down Syndrome. He’s made the excellent point that Ohio House Bill 214, under the guise of criminalizing abortion, actually criminalizes discussion between a woman and her doctor:

“…this law doesn’t hinge on the act of performing an abortion, but rather on whether there is “knowledge” of motivation for abortion. If the doctor is aware of a prenatal diagnosis as motivation, an abortion would be a felony. Without awareness, even if that was the woman’s motivation, an abortion could safely proceed. Therefore, the bill functions only to silence women after they receive their prenatal diagnosis—or, even worse, early pregnancy screening (note that such screenings are not accurate enough to be diagnostic)—lest a doctor begin to suspect their motivations and refuse to terminate a pregnancy.”

Ohio House Bill 214 makes it so that a woman seeking an abortion because she knows or suspects that the fetus she’s carrying has Down Syndrome is highly motivated to stay quiet about her reasons for wanting the abortion so that she’s not refused it.  And in this environment, the myths about Down Syndrome and stigma surrounding it continue to thrive – there’s no room for open, honest conversation with medical health providers and anyone who may report to them.

And, as I’ve said several times in this blog – if the GOP cared about disabled children, they would make it easier to raise a disabled child in America.

It’s also worth noting that the Trump administration is removing “guidance documents” about the ADA from its website. There was no explanation as to why, beyond a statement by Jeff Sessions that they were part of a broader removal of “25 examples of improper or unnecessary guidance documents identified by our Regulatory Reform Task Force led by our Associate Attorney General Rachel Brand.”

The GOP in the House and Senate don’t care about disabled people, it seems, except when it can use them as pawns to do an end-run around women’s constitutionally-protected rights to bodily autonomy.

Let’s Break Briefly from Ohio House Bill 214 to talk about Ohio Governor John Kasich

I remember this guy from the Presidential debates. I remember thinking, “Okay, I could live with him as President. He gets that there needs to be a safety net and that it’s unfair to demonize people for needing it.”

I should have listened more closely to those people who’ve been saying, “Don’t be fooled; John Kasich is no moderate.” In 2016, Politico summarized his actions to limit abortion access in Ohio:

“Laws signed by Kasich prohibit almost all abortions after 20 weeks of pregnancy, mandate ultrasounds before a woman can get an abortion and require abortion clinics to establish formal written agreements with local hospitals about emergency care — a provision that has been repeatedly modified to be even more restrictive and make it harder for clinics to comply. “

It’s too bad, because Kasich reminded me (or he used to) that not all of the GOP are from that school of Paul Ryan and Mitch McConnell and their cronies (I’d say Trump, but I figure that Trump only identifies as GOP because he can go the furthest with them; he’s not a Conservative) that don’t seem to have much use for marginalized groups or much interest in helping them.  I know that there are Republicans, because I talk to them, who are quite socially aware: they’ve done their research on social issues, they speak with insight, and while I may not always agree with them on all things, the conversations are always thought-provoking.

I wish more of them would run for office, damn it.  Because it’s becoming difficult – so difficult – not to become totally disillusioned with the current crop of GOP in the House and Senate, watching them throw my friends in the US under the bus again, and again, and again.

(Not that there are Democrats that are doing it too – as I wrote earlier, I’ve been disturbed, and upset on female American friends’ behalf, by some of the Democrat rhetoric around sexual harassment in particular recently. Its hypocrisy seems to have increased in the last little while, and I think it’s important to call that out, because I like to be fair.)

But that, at this point, is not affecting legislation. The tax bill and the repeal of the individual mandate affects especially my disabled friends that are, for a variety of reasons:

  • Most affected by cuts to Medicaid
  • Unlikely to benefit from the tax cut.

Cuts to Medicaid mean that disabled people lose services that they depend on; some will no longer be able to live independently; some will die. This is the way it happened in Britain  with the austerity cuts – the government thought that it could save money by making cuts to supports and services to disabled people and to the National Health Service, and people died – in excess of  120000 deaths were estimated to be linked to austerity cuts, as of November 2017.

But back to Ohio House Bill 214…

America, Meet Me at Camera Three

Ohio’s House Bill 214 is not an indicator that the GOP cares about people with Down Syndrome; it’s a blatant attempt by the GOP to emotionally manipulate the public into supporting an (albeit limited) ban on abortion – after all, who could object to measures designed to stop the abortion of disabled children?

I object, as I said earlier.

Ohio House Bill 214 is  totally typical of a government more committed  to fetuses than it is to making sure that American families have what they need to raise children, and I won’t feel like the monster that Ohio lawmakers want me to because I can’t support it. Using a fetal diagnosis of Down Syndrome as a way to further an anti-abortion agenda is pretty objectionable – a similar law was found to be unconstitutional in Indiana, and another in Louisiana is being blocked by the court –  so he hasn’t got much moral ground to stand on here. Dr. Leesha Thrower, whose daughter has Down Syndrome, said it better than I can:

“These politicians do not care about my six-year-old daughter. If they did, they would be using their valuable time to make sure that every child born with Down syndrome has what they need to live a healthy, full life…I want my leaders to have my back, and my child’s back, instead of using her as a pawn in a political effort that is only going to harm women and make it harder for them to make the right decision for them and their families.”

Well said, Doctor. Well said.
Happy New Year, folks. Let’s make 2018 a good one.

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Conflicting Advocate Hats: Alex Spourdalakis

Content Note: Ableism, murder of disabled child, suicide, abortion

Gray sad face with closed eyes. Keyword: Alex Spourdalakis

Image Description: Gray sad face with closed eyes.

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14-year-old Alex Spourdalakis was murdered by his mother Dorothy Spourdalakis and godmother Jolanta Skordzka.

And I say “murdered” deliberately, not to garner an emotional response, but because Alex’s mother and godmother did legally murder him. They gave him an overdose of sleeping pills with the intention of bringing about his death. When it became apparent that the pills weren’t going to kill him, they stabbed him repeatedly, and slit his wrists so deeply that they almost cut his hands off. They murdered him.

All this happened in 2013, but Alex Spourdalakis’ murder and the trial are back in the news again recently because Dorothy Spourdalakis and Jolanta Skordzka have been released from prison. They pleaded guilty to involuntary manslaughter and were sentenced to time served. After getting credit for the three years that they spent at the the Cook County prison, they are now free women. They spent significantly less time in prison than Robert Latimer served for murder of his disabled daughter, Tracey or that that Kelly Stapleton will for the attempted murder of her autistic daughter, Isobel, both of which were considerably less violent crimes.

Alex Spourdalakis and Two Important Conversations

As I did when I wrote about Kelly and Issy Stapleton, there are two important conversations to have when we talk about what happened to Alex Spourdalakis. One of them is what happened to drive a mother to such hopelessness that she felt there was such a lack of options for her child that his death was the most preferable. Overall, the media has painted Dorothy Spourdalakis as a woman who couldn’t get any support to deal with Alex’s specialized support needs, but the Chicago Tribune talks about how Mary Betz of Autism Illinois visited Dorothy Spourdalakis when Alex was hospitalized to find out what supports she needed, and was told that only a lawyer was necessary. The same article talks about how Dave Clarkin, a Department of Child and Family Services spokesman, said that family members refused “referrals to community-based services ranging from respite to psychological counseling.”

Why?

What is it about services that made the family reluctant to accept them?

The second discussion is about how even if there’s a total lack of services, it’s not an excuse to murder a child. And I acknowledge that the stress level for parents taking care of disabled children can get very high — it still doesn’t make killing a disabled child excusable. There’s a perception in our culture that if a disabled child is in pain, or if we figure that the child isn’t going have what we define as “quality of life”, or if care of the child or watching the child go through the challenges potentially involved with having a disability is going to take too great a toll on the parent(s), then the child’s murder not only becomes justifiable, but understandable.

If the child is disabled.

We’re disgusted by parents who kill their non-disabled children.

But when the child is disabled…different story. And there needs to be more discussion about that — there needs to be more discussion about how when you kill a disabled child, you are killing a child, period, and the deliberations of the justice system and the penalties for that action need to reflect that.

Read this blog for more about the murder of disabled children and two important discussions

Dorothy Spourdalakis and Jolanta Skordzka were originally charged with first degree murder, they should have been convicted with first-degree murder, and they should have received the appropriate sentence. Parents and relatives don’t get to decide which children get to have a future and which don’t.

I was speaking about this last week, and a friend said, “Careful…you’re starting to sound pro-life again.”

Alex Spourdalakis and Conflicting Advocate Hats

When Zika first emerged, I blogged about how abortion for ableist reasons sometimes makes me feel conflicted as someone who is both pro-choice and opposed to ableism, and how I deal with that conflict. Alex Spourdalakis’ story brought up some internal conflict as well, once my friend explained his statement…how could I be so judgemental of Dorothy Spourdalakis for denying her son the right to live based on her own needs, when I essentially gave women who had abortions a free pass for doing exactly the same thing?

“That’s *not* what I do,” I said.

“Isn’t it?”

I went home and thought about it.

And lost a bit of sleep.

And decided that no, that’s *not* what I do, although you’re certainly welcome to disagree.

Sounding the Same, But In Fact Very Different

Very soon after starting this blog and reading other peoples’ blogs, I started coming across perspectives that made me question, for really the first time, what my stance on abortion was going to be if I was going to be a disability activist. It was a more complicated question than I’d thought, and it made me fine-tune my stance to “It’s not a baby until it can live outside the mother” which can both simplify and complicate the whole business.

For the purposes of my friend’s query, however, it makes things very simple — for me.

I mentioned earlier that I wasn’t using the word “murder” in this context to evoke emotion because Alex was legally murdered. I just as deliberately *won’t* use the word “murder” when I’m talking about abortion because “murder” is a legal term that presupposes that a fetus is a person. And there’s where the rubber hits the road for me. My friend may be correct in that the language that I use to talk about the murder of disabled children sounds like the language that some (not all) pro-life people use to talk about abortion, but the two situations couldn’t be more different in my eyes.

Alex Spourdalakis was a person with rights guaranteed to him by both the United States Constitution and by the United Nations. He was a minor in his mother’s custody, which meant that she was responsible for his well-being. Her rights as a US citizen do not guarantee her a child that is easy to take care of, but in the state of Illinois a parent can voluntarily surrender a child should care of that child become too difficult for the parent to manage — it’s a drastic step involving relinquishing parental rights, but it’s not as drastic as making a profoundly ableist assumption that a disabled child has no chance at happiness in life and that death would be preferable to life in “the system” and committing murder based on those those assumptions.

Even though Dorothy Spourdalakis’ intention was obviously to kill herself after murdering Alex, her suicide note indicated that his murder was about what *she* couldn’t deal with putting him through anymore and with what she didn’t want for him (as it seems to often be in these cases.) A picture circulated through the media, showed the following excerpts from her handwritten note, touted as reasons that Dorothy believed Alex Spourdalakis was better off dead:

  • Alex will not be neglected and abused by the medical community anymore.
  • Alex will not suffer under “the system”
  • Alex will not be discriminated against anymore
  • Alex will not be treated as “retarded” or less than human because he is disabled and cannot speak for himself.

I have empathy for parents that are beaten down by a lack of support and the pain of seeing their beloved children suffering. I really do. But justifying the murder a 14-year-old who is “disabled and cannot speak for himself” in the name of getting him away from those that would treat him as “less than human” would be laughable if it wasn’t so infuriating. After all, what could be more dehumanizing than deciding that you have the right to take that child’s life based on your assumptions on his feelings about it? So forgive me if I can’t buy Dorothy Spourdalakis’ noble-sounding rhetoric.

Murdering your child because of any of the things she mentioned (or, as I believe it more accurately is, a parental desire not to see a disabled child deal with those things) is not okay. It’s simply not.

Which brings me back to what my friend said to me. As I said, Alex Spourdalakis (and Tracey Latimer, and everyone on this list of disabled people murdered by parents or caregivers, which is only current to the end of 2014) were people that were murdered. They had legal rights that a fetus (or developing child, if you prefer) doesn’t — and that I’m not invested in fighting for a fetus to get, frankly (or interested in arguing about why that position is right or wrong.) That’s a whole other fight to me, and one that, for a variety of reasons, I’m not willing to take on.

I do feel very strongly about the murder of disabled people and the how their murderers get the sympathy of the public and media and the leniency of the justice system. It’s a fight that I *will* take on because it’s simply not right.

Bottom Line

So that’s why my friend’s challenge to my thinking didn’t make me lose (much) sleep — and why I’ll continue to fight to make sure that:

1) There’s more investigation into why parents get pushed into these places of desperation, where murdering their disabled children seems like the only option for dealing with the challenges that they encounter on that journey

2) Ableism in all forms continues to be recognized and eliminated as much as possible.

3) Safe and affordable abortion is available to all women, regardless of their reason for making that choice.

I can manage wearing conflicting advocate hats, but I’m glad that people call me on it when my thinking appears inconsistent. I need that to stay the best advocate I can be.

Rest in peace, Alex Spourdalakis. I will not forget you.

Please read the Autistic Self-Advocacy Network’s Statement on the Sentencing of Alex Spourdalakis’ Murderers

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Zika and the Problem of Conflicting “Advocate Hats”

A friend sent me a link on the weekend to an article about from a Conservative blog that he likes, and it really got me thinking.

Content Warning: Abortion, Ableism, Infant Illness

Zika concept graphic. A globe with a mosquito sitting on it, and the word "zika" in front of it in red block letters. Keyword: Zika

Image Description: Zika concept graphic. A globe with a mosquito sitting on it, and the word “zika” in front of it in red block letters.

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The article in question, The UN Wants to Battle the Zika Virus By Killing More Babies, is about the UN’s response to the Zika crisis in Centre and South America, in the face of encouragement by 5 of the countries in which Zika has emerged that women delay pregnancy by as much as two years. Since pregnancies tend to be unplanned in these countries, abortion legal only in certain circumstances (Colombia) or outright illegal (El Salvador) and birth control difficult to get, the UN’s recommendation is that if the governments really want women not to have babies, they need to rethink their stance on legal, accessible abortion, birth control, and sexual education.

My friend said,

“I suppose that you’re outraged by these ableist strategies?”

So I went off on a tare about my abortion beliefs, talking about how every woman should have access to sexual education, birth control, and abortion, and how if a woman chooses to have an abortion because the baby is disabled, it’s none of my business and not my place to judge. I also went on a bit about how if we want to talk about ableism and and abortion, maybe American pro-lifers could get as worked up about how it goes on in their own backyard every day and do something constructive to stop the circumstances that cause women to consider it instead of just talking about a reality that they don’t like. I finished with a bit of a rant about how if they were really concerned about the abortion of Zika-affected fetuses in Central and South America, they could either start adopting Zika-affected babies from the region so that they’re not aborted or they could start giving money toward research for a cure for Zika.

And he emailed back, “So I was wrong?”

And I emailed back,”It’s ableist as hell and it makes me sad.”

Firstly, because the link between Zika and microcephaly is still disputed. However, even with link that’s still not been proven solid, what’s strong enough to prompt the UN to finally recommend changes to women’s’ health policy that needed to be made anyway?

The fear of having a disabled child.

Zika and the Importance of Reproductive Options for Women

Of course, this conservative blog had more than a bit of pro-life spin to it. No one has suggested killing Zika-affected babies, but rather making reproductive options (not just abortion) more accessible in countries where Zika is an issue (same thing to many pro-life people, I realize, but there’s a distinction to me as a pro-choice person, and I’m not interested in arguing that here.) This was something that needed to be done anyway. All women should have access to reproductive information and options (my opinion).

And part of that, for me, is that it’s none of my business why a woman aborts her baby. So even if a woman’s reason is ableist as hell, there’s no reason that I should know (or want to know) unless she wanted me to. I do believe that abortion, even for ableist reasons, needs to be made and kept legal, available, accessible, for all women.

This is has been a tough place to get to. Some days it’s hard to stay there. It’s hard to sort out my feelings about abortion when I’m both an advocate for women’s reproductive rights and someone who intensely dislikes ableism. I think that some people can ask whether someone can have both orientations. Most days I think it’s possible. Some days it’s difficult.

Sometimes my mind my mind starts to fight with itself when I hear things like things from Paula Avila-Guillen of the US Centre for Reproductive Rights, speaking of Central and South America to The Guardian:

“In many rural areas men and women do not have easy access to contraceptives and many pregnancies, especially in teens, are the product of sexual violence and abuse,”

My fists clench as I  think about how people everywhere need good sexual education, and access to birth control and reproduction options should have the options, including abortion. And yes, it’s especially important for women living in countries where the medical community has seen enough of Zika to declare its belief that the virus  and microcephaly in infants are linked, where pregnancy can be difficult to avoid and where there are few if any no services for raising disabled children deserve to know, in light of these realities, about what Zika might do to a fetus. I’ve been to South America. I know that there are few if any government supports for disabled people and loved ones that care for them. I remember vividly seeing homeless people on the streets, legs paralyzed with no wheelchair, dragging themselves around as they begged for money.

But it should have happened long ago. The UN’s recommendation to these countries that governments become more open to the idea of improving reproductive rights for women should have come a long time ago, says the women’s rights advocate in me. That it’s come about because of the suspicion that Zika will cause disability in infants is ableism, pure and simple, says the disability advocate in me, who wishes that all lives and life experiences were valued equally and that all disabled people everywhere had the supports that they needed at all stages of

I believe that disabled babies deserve a chance too, which sounds like something the pro-life movement would like.

But I’m not pro-life, as much as I sound like it sometimes. And the UN has no monopoly on ableism.

Zika and Abortion Specifically

As of Feb 3, there have been 35 cases of Zika in the US, all of them caused by exposure to infected mosquitoes through travel. No pregnant women have been infected.  There’s also some evidence to support the idea that Zika may be sexually transmitted.

A Zika-infected baby born with microcephaly in North America would theoretically have a better chance at a fulfilling life in a country like the United States or Canada, where more services are available (not enough, but more) than one born in Central or South America.

But should a fetus be diagnosed with Zika in the US, how welcome would it be? I found these comments at the end of only 2 articles about Zika:

  • EXCUSE ME???? What is unethical – and in fact IMMORAL – is to knowingly bring a severely mentally and physically disabled child into a world of SEVEN BILLION PEOPLE where we are RUNNING OUT OF EVERYTHING. Good God. Why is this even a question?”
  • “My unborn deserved to live without stigma, stares, and the ability to be productive and not yelp and drool, and not be a 19 year old that had to have changed diapers, who could get married and have a family, pay ball, run……so I decided that termination was best for the both of us. I don’t regret that decision at all.”
  • “Why would any woman knowingly allow a severely deformed-disabled child to be born? Would SHE want to be born in that condition?”

I hate comments like those. And yet, as someone who believes in a woman’s right to have an abortion, I would not say to the woman in the second comment, “Well, your reasons for having an abortion were wrong.” That’s not my right.

And for the record, I do share the concerns that women have brought up about Zika-infected fetuses in the US especially: that lawmakers will try to force women will to carry to term against their will without adding services to assist with raising them, that they’ll become another way to shame women (“You shouldn’t have traveled to that area”, “you should have been more careful with birth control”, “you shouldn’t be having sex right now”), and that they’ll be used to in general to chip away at the right to legal abortion in areas where it’s particularly contentious.

I will always fight for a woman’s right to have an abortion, regardless of her reason.

That doesn’t mean that I can’t be sad about the reason, because ableism makes me sad and angry.

There’s conflict. But where isn’t there conflict, right?

More about this later, probably.

 

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