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MERRIMAC, WI – Members of a sixth-generation Wisconsin farming family were recently forced to make one of the hardest decisions of their lives. They had to choose whether or not to put their severely disabled child on birth control.

Megan and Josh Lowe’s daughter, Norah, had her first seizure when she was just a toddler. Today, Norah is 15 years old, nonverbal, and nonambulatory. A month ago, Megan made a decision, in consultation with Norah’s doctor, to begin giving the teen a daily oral contraceptive.

Norah suffers from Rett syndrome. Impacting primarily females, Rett is a “rare genetic neurological and developmental disorder that affects the way the brain develops,” according to the Mayo Clinic. The syndrome causes patients to lose muscle control and the ability to speak and walk, and can cause seizures. Most patients with Rett syndrome will develop intellectual disabilities. There is no cure.

Megan Lowe told the American Independent Foundation that when the U.S. Supreme Court issued its ruling in Dobbs v. Jackson Women’s Health Organization and overturned Roe v. Wade in 2022, she immediately thought of Norah.

“Because I know the likelihood of anything happening to her is pretty high as far as sexual assault or anything like that, or it’s pretty high for kiddos like her,” Lowe said. “I called another Rett mom in Illinois, and she was freaking out, but of course, she could still have access. And so we were just like, Well, you can come down here. And I called her [Norah’s] doctor, and we immediately started figuring out, like, the IUD or the implant in the arm or how we would do this because she couldn’t sit still.”

The reality of sexual assault for women and girls with disabilities is horrifying. According to a paper published in Disabled World in 2012 and updated in 2023, about 80% of women with some form of intellectual disability have been sexually assaulted — and half of them have been assaulted more than 10 times.

Abortion care is legal in Wisconsin until 21 weeks and six days of pregnancy. However, advanced care practitioners such as nurse practitioners and physician assistants cannot perform abortions or prescribe abortion medication. Abortion medications cannot be prescribed via telemedicine. Medicaid does not cover abortion in Wisconsin, and minors must have the consent of a parent or guardian.

The state also requires that all patients observe a 24-hour waiting period after first seeing a physician before obtaining an abortion, and a patient must see the same doctor for both required visits.

Lowe shared a story about once calling Republican state Rep. Ron Tusler to express her outrage about the abortion restrictions in the state.

“I’ve called him before, and this is the same dude who asked me if my daughter could, like, drive to another state. She was 14 at the time,” Lowe said. “I feel that if she was put in that situation, and she was pregnant, I mean, I can’t imagine. I’ve heard these people say, Couldn’t she carry it to term? And I just can’t wrap my head around trying to explain to someone that someone in her condition, carrying a child to term and how traumatizing that would be.”

In 2019, the Lowes, who had been growing everything from corn to soybeans, began growing cannabis. They say they pivoted to this crop because of its medicinal benefits for Norah. Although marijuana is not legal in Wisconsin, cannabis, or hemp, is, as long as the tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, stays under the legal state limit of 1%.

The Lowes use the hemp they grow to make chapstick, body salves, gummies, and an oil they give to Norah that Megan said has helped her daughter get off several medications that had nasty side effects.

Medications such as the anticonvulsant levetiracetam, as well as baclofen and gabapentin, “made her just completely a zombie, she would sleep all day,” Lowe said. She added that they’ve had to keep Norah on anti-seizure medications but have been able to control many of her other symptoms, such as violent, uncontrolled movement of her hands and feet, with CBD oil, without the side effects of the other medications.

“These people shouldn’t have to drive 75 miles in either direction to get a medicine that their doctor thinks would help them,” Lowe said. “I feel like the most vulnerable people in the state are being forgotten about, whether it’s child care funding or school funding, abortion coverage, cannabis use, legalization. We can’t even get the most vulnerable people covered, taken care of in this state.”

Lowe said she’s been accused by Republican lawmakers and their supporters of making up her story about Norah’s condition.

“Well, my daughter is this, and if this happens, this is what we would have to do. And for some real reason, people don’t believe that that’s actually someone’s reality,” Lowe said .“I know that people would, if they knew our position and Norah’s position, I know they would be completely disgusted, like, on both sides of the aisle. If they sat down and said, What if this happens? But I just don’t know what’s wrong with people. They can’t see outside themselves. I don’t know. I mean, this isn’t the Wisconsin I grew up in, that’s for sure.”

Published with permission of The American Independent Foundation.

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