{"id":621,"date":"2023-02-01T17:42:55","date_gmt":"2023-02-01T17:42:55","guid":{"rendered":"https:\/\/www.privategirlsinbrisbane.com.au\/blog\/7-stories-of-barriers-to-reproductive-care-for-those-with-disabilities\/"},"modified":"2023-02-01T17:42:55","modified_gmt":"2023-02-01T17:42:55","slug":"7-stories-of-barriers-to-reproductive-care-for-those-with-disabilities","status":"publish","type":"post","link":"https:\/\/www.privategirlsinbrisbane.com.au\/blog\/7-stories-of-barriers-to-reproductive-care-for-those-with-disabilities\/","title":{"rendered":"7 stories of barriers to reproductive care for those with disabilities"},"content":{"rendered":"

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P<\/span><\/span>regnancy, for the average person, is an exercise of extremes \u2014 swelling body, welling emotions, surging hormones. For people with chronic conditions and other disabilities, the experience can be even more jarring, full of additional barriers, stigma, and risks.<\/p>\n

But it\u2019s not just pregnancy. In the United States, disabled people are less likely to be taught comprehensive sexual education and given access to contraceptives, and are more likely to have unintended pregnancies. And during pregnancy, the disparities are just as devastating: Disabled women are more likely to have adverse birth outcomes and to experience pregnancy complications, in part because they often are on medications that interact negatively with pregnancy. The Supreme Court\u2019s decision to overturn abortion as a constitutional right adds gasoline to an existing fire. \u201cI think the Dobbs ruling has a huge, unfortunate, detrimental impact on people\u2019s lives,\u201d said Monika Mitra, director of the Lurie Institute for Disability Policy at Brandeis University.<\/p>\n

These are barriers with deep roots.<\/p>\n

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Historically, disabled and chronically ill people, especially people of color, were restricted from making choices about their health and childbearing, Mitra said. That kind of discrimination persists today: families, clinicians, and others police disabled people\u2019s activities and bodies, many health care settings remain inaccessible, and courts and child welfare agencies continue to question whether disabled and chronically ill people can be good parents.<\/p>\n

\u201cWe cannot separate out reproductive care access, we cannot separate out perinatal care access, outcomes, experiences, without talking about eugenics,\u201d she said. \u201cWe cannot talk about it without contextualizing it within the history where people with disabilities were forcibly \u2014 and continue to be \u2014 institutionalized \u2026 And the third piece of it, which they\u2019re all interrelated, is that people with disabilities were, and still are, seen as nonsexual beings.\u201d<\/p>\n

STAT spoke with seven people about their experiences seeking out sexual and reproductive health care, becoming pregnant, having an abortion, or parenting while disabled or chronically ill. Their disabilities and conditions span the spectrum, but reflect existing and new problems faced by childbearing people in the United States, especially those who are part of historically marginalized groups.<\/p>\n

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Each step, from the quiet contemplations of pregnancy to the dramatic experience of childbirth and the challenge of parenthood, was made more complex \u2014 at times, more risky, or difficult, but also more euphoric \u2014 by their disabilities and chronic conditions.<\/p>\n

\"Breaker<\/figure>\n

Stefanie Kaufman-Mthimkhulu<\/strong><\/h2>\n

Age: 27
<\/strong>Location: Rhode Island
<\/strong>Chronic conditions\/disabilities: Inflammation-related disorders, muscular myopathy, extreme exhaustion, neurodivergence (autism)<\/strong><\/p>\n

When Stefanie Kaufman-Mthimkhulu\u2019s partner woke up one day in January 2019 and told her he had dreamt she was pregnant, she didn\u2019t believe it. She\u2019d been told in college that she wasn\u2019t ovulating and that her ovaries were covered with cysts, which meant she\u2019d likely need in vitro fertilization or hormone treatment to get pregnant. \u201cEven though I was in college and I was young, I was definitely upset \u2026 I think I realized in that moment that there was a part of me that didn\u2019t feel like I would ever be capable of raising a child, particularly because of my mental health issues.\u201d<\/p>\n

Her first pregnancy was traumatic. \u201cFor a lot of disabled folks, you get used to maybe the size or the shape or the way that your body moves, or knowing like, this joint moves in this way. You know your body. And when you\u2019re pregnant, everything is up for moving and changing.\u201d<\/p>\n

Delivery was no better. Kaufman didn\u2019t want an epidural, and had said so. She\u2019d spent many months of her life unable to move her legs after a surgery to remove infected tissue from her spine, and had no desire to lose sensation in her lower body during birth. But clinicians insisted, telling her she had to get an epidural or leave the hospital and return when her cervix was more dilated. \u201cI spent 11 hours of labor in this dissociative state, trying not to panic.\u201d<\/p>\n

\u201cWhen I had a three-month-old and I found out I was pregnant again, I was like: no. I picked up the phone and called Planned Parenthood.\u201d Kaufman was living in New York at the time, and secured an appointment for a medication abortion within a couple of days, at a clinic 45 minutes from her home. She was about seven weeks pregnant.<\/p>\n

\u201cBut no one actually prepared me \u2014 maybe it\u2019s obvious, I don\u2019t know \u2014 that I was going to pass something that I\u2019d need to look at and identify and be like, \u2018That\u2019s it.\u2019\u2026I\u2019m a hundred freaking percent pro-abortion. But what I was looking at was the beginning of a placenta forming, that\u2019s how I perceived it. And I definitely had an emotional breakdown.\u201d\u00a0Kaufman bought a box, wrote a note \u201cthanking this spirit for coming through,\u201d and buried it with flowers in her backyard.<\/p>\n

\u201cThere\u2019s this thing with abortion where people are really scared to talk about the impact it has or how we navigate that spiritually. Because a lot of people\u2019s arguments hinge on, \u2018It\u2019s not really a life until it comes out.\u2019 That\u2019s not the hinge point for me. Whether it\u2019s a life or not, it\u2019s still my decision if I\u2019m going to bring it into the world or not.\u201d<\/p>\n

She is now pregnant again, and looking forward to giving birth in June.<\/p>\n

\"Breaker<\/figure>\n

Leigh Krauss
<\/strong><\/h2>\n

Age: 34
<\/strong>Location: California
<\/strong>Chronic conditions\/disabilities: Multiple sclerosis<\/strong><\/p>\n

Leigh Krauss was diagnosed with multiple sclerosis<\/a> nearly a decade ago, in her final year of her schooling as a physical therapist. It took her years to figure out what lifestyle, workload, and tools worked best for her to manage her disease.<\/p>\n

When she decided, a few years ago, to become a parent, she knew pregnancy could trigger post-birth rebounds of MS symptoms. Krauss and her husband, with support from their families, opted for IVF and surrogacy. Her employer\u2019s health plan covered egg freezing, but her family had to pool resources to hire a surrogate, which can cost more than $100,000.<\/p>\n

\u201cOur first surrogate went into a very, very preterm labor. She was put on bed rest at 24 weeks and delivered at 27 weeks \u2014 very, very small, like one pound. It was like the smallest thing you can imagine,\u201d she said. Her baby \u201creally fought hard,\u201d she said, but passed away within weeks.<\/p>\n

Making the decision to try again less than a year later was \u201cimmensely hard,\u201d Krauss said. \u201cI just figured, \u2018Okay, we can just start the process and try to heal as we go,\u2019 which we did in some ways.\u201d That pregnancy gave Krauss a healthy baby boy this summer \u2014\u00a0but she\u2019s had to grapple with the what-ifs, and guilt.<\/p>\n

\u201cLike, \u2018Maybe if I had carried, this would have been different.\u2019 \u2026 Did I miss some kind of bonding that happens between mom and son or daughter in utero? There\u2019s a lot of questions about that. But I think if you keep asking yourself all that stuff you\u2019ll drive yourself a little crazy. And you do have to make peace with it at some point.\u201d<\/p>\n

She knows pregnancy could have sent her body haywire. To become pregnant, she would\u2019ve had to go off her medication, Tysabri \u2014 which could, in turn, trigger symptoms to rebound. \u201cI had my life pretty rigidly set to maximize what I\u2019m doing and my energy levels and, even not carrying, it\u2019s still a huge adjustment for anybody.\u201d<\/p>\n

\u201cAt the start, when I was super exhausted, I definitely had more symptoms that I don\u2019t live with daily, popping back up. But we wanted this so badly and especially with what we went through, I just came from a place of gratitude \u2014 that I\u2019d really wished for this so much.\u201d<\/p>\n

\"Breaker<\/figure>\n

Brianne Dollar<\/h3>\n

Age: 22
<\/strong>Location: Georgia
<\/strong>Chronic conditions\/disabilities: Three years in remission from acute myeloid leukemia, graft-versus-host disease on reproductive organs, peripheral neuropathy, neurological issues and iron overload from chemotherapy<\/strong><\/p>\n

Brianne Dollar was 17 when she was first diagnosed with acute myeloid leukemia. Doctors briefly mentioned that she\u2019d probably lose her fertility as a result of the treatment, but childbearing was a less urgent matter than her rapidly progressing cancer. She received seven months of chemotherapy but ultimately relapsed, at which point doctors suggested she undergo a bone marrow transplant.<\/p>\n

\u201cThis is kind of where I was told if I wasn\u2019t infertile already, I would likely be afterwards,\u201d she said.<\/p>\n

She developed graft-versus-host disease, an inflammatory response to the transplant, that gave her constant urinary tract infections and scaly patches on her vagina and labia.<\/p>\n

It took almost two years for her to learn, during an appointment at a survivor clinic, that she was in permanent menopause at 21. She felt an overwhelming sense of disappointment. \u201cIt took me a bit to get a little angry about that,\u201d she said. \u201cI started hearing about more resources, like there\u2019s resources for patients who have cancer to get their eggs frozen. And I\u2019d never been told that. I always just figured that if it was an option for me, they would have said it.\u201d<\/p>\n

Because she was so young when she had cancer, getting to know her sexuality was delayed. \u201cDating and sexual experiences are something that I didn\u2019t really get to have. And for a while, they were just unsafe. I wasn\u2019t allowed to do anything. Kissing someone would have been like, be careful, because my transplanted immune system was so weak. I had to wear a mask before wearing a mask was cool.\u201d<\/p>\n

The Dobbs decision weighs on her in rural Georgia. \u201cEven if I did get pregnant, I would have struggles actually carrying a child to term. I would be scared to go to a doctor in Georgia and tell them what\u2019s going on.\u201d<\/p>\n

\u201cNone of the providers down here have probably seen anyone who has ever had vaginal GVHD or who has had a transplant \u2026 theoretically, the only place I can go is Atlanta, but I can\u2019t drive. It\u2019s four and a half, five hours away from here. So I haven\u2019t actually seen an OB\/GYN in over a year.\u201d<\/p>\n

\u201cAnd there\u2019s now talks to ban birth control in certain states,\u201d she said. \u201cAnd birth control is how I get my hormones \u2026 And that\u2019s for lowering my risk of osteoporosis and managing my menopause symptoms.\u201d She\u2019s exploring an IUD as a long-term option, but knows it would probably require that long drive to Atlanta, to specialists who understand her unique health history and concerns.<\/p>\n

\"Breaker<\/figure>\n

Syndey Rose Sandoval<\/h3>\n

Age: 24
<\/strong>Location: Georgia
<\/strong>Chronic conditions\/disabilities: Generalized anxiety disorder, panic disorder, ADHD, endometriosis, PCOS, POTS, hEDS<\/strong><\/p>\n

Sydney Rose Sandoval\u2019s first period, in the eighth grade, was awful. \u201cFor probably a year after that, I would miss school for a few days because the bleeding was so heavy and I was in so much pain\u2026My mom thought I was dramatic until I was 18, and she was in the doctor\u2019s office with me.\u201d Sandoval sobbed as the doctor inserted his fingers into her vagina and tapped on her abdomen. \u201cMy mom looked at me and, in front of the doctor, was like, \u2018Sydney, you\u2019re being dramatic. This isn\u2019t painful.\u2019\u201d But the doctor knew something was off. She needed surgery to drain the many cysts inside her \u2014 one the size of a softball \u2014 and laser away out-of-place endometrial tissue.<\/p>\n

The surgeon ran dye through her fallopian tubes to make sure everything was fine, and found both tubes blocked. Doctors were able to unblock the right one, but not the left. \u201cSo that means that up until that point, I was not ovulating, for sure. And from that point on, if I am ovulating, I\u2019m really only seeing one egg every other month.\u201d She remembers the doctor telling her she shouldn\u2019t wait to have children \u2014 that she should get pregnant now or risk never having kids.<\/p>\n

She was 18.<\/p>\n

\u201cI had plans, and still do have plans. That information, I wish I never got it, because ever since then, it feels like there\u2019s this clock on my womb.\u201d<\/p>\n

\u201cIt took me a while to accept that there\u2019s more to me than procreation because, for a while, I felt if I couldn\u2019t do anything else, I could have a child. Like, if I don\u2019t get my doctorate and practice in whatever field, I can still raise a good human. I love kids and have always wanted a big family. And the one thing my body was made to do, it essentially can\u2019t. And if it can, it\u2019s going to be very difficult. So that was a very hard pill to swallow, and still is a hard pill to swallow.\u201d<\/p>\n

Sandoval needs another surgery to laser off more tissue, but is putting it off until she\u2019s ready to get pregnant (her chances are highest in the months that follow). She has had at least three ovarian cysts rupture, causing such shocking pain that she once collapsed in a hospital parking lot after driving herself to the emergency room.<\/p>\n

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\"Breaker<\/figure>\n

April Meredith<\/h3>\n

Age: 44
Location: Tennessee
Disabilities: Retinitis pigmentosa, psoriatic arthritis, chronic pain, anxiety, and depression<\/strong><\/p>\n

When the Dobbs decision landed, April Meredith, a mother of three and an independent living specialist, found herself processing the news in the Empower Tennessee offices where she works. She hosts Empowered Ladies, a support group she runs for women with disabilities in Tennessee.<\/p>\n

\u201cReproductive health care is on people\u2019s minds right now. You might be training somebody to use a screen reader and say, \u2018Just look something up.\u2019 They pull up what\u2019s on their minds.\u201d<\/p>\n

But she also knows firsthand how critical it is to be able to get safe, accessible health care. She herself needed a D&C \u2014 the procedure used to remove a pregnancy from the uterus \u2014\u00a0 due to a miscarriage. And she faces obstacles to accessible medical care, as well as the harmful assumptions of strangers and health care professionals. At the gynecologist, she has been peppered with questions about her RP or arthritis, even when those conditions were unrelated to her visit. \u201cI even had a receptionist, as I was checking in to a clinic, say, \u2018I think I\u2019d kill myself.\u2019 Just openly saying it in a large lobby for other people to hear. I said, \u2018Actually, I have other disabilities. Two of them are anxiety and depression,\u201d Meredith said. \u201cShe said, \u2018No wonder.\u2019 Then I thought, \u2018Why am I having to explain this when I\u2019m checking in to my gynecologist\u2019s office?\u2019 It had nothing to do with why I was there.\u201d<\/p>\n

Meredith is exasperated by the level of education about basic disability etiquette she has to give health care professionals. The independent living movement has progressed in integrating people with disabilities into mainstream society, she said. But sometimes, it is necessary to step back and provide basic training on how to best serve those with disabilities.<\/p>\n

One of the most common assumptions about parents with disabilities, she said, is they shouldn\u2019t have children at all. For her, it\u2019s natural to talk with her husband and children about disability \u2014 she takes them to disability-focused events and teaches them about all accommodations she uses, like audio descriptions. Meredith doesn\u2019t shy away from the family\u2019s concerns, especially since retinitis pigmentosa is genetic. So far, none of her children have shown signs of RP. She\u2019s told them that if they \u201cdo get diagnosed with RP, we\u2019re going to grieve. But you\u2019re going to have lots of resources available to you.\u2019 My children won\u2019t stay scared as long as I did,\u201d Meredith said.<\/p>\n

Being a parent has also turned her into an advocate for other parents with disabilities. She admires that women with disabilities of her daughter\u2019s generation are able to focus their activism on intersectional identities, or on identities other than disability, like race or gender. \u201cI like that younger women (with disabilities) are able to focus on womanhood and not have to fight as much on the disability rights side,\u201d she said.<\/p>\n

But she\u2019s deeply worried about what she sees as the \u201csubtle stripping away of access\u201d and the lackluster enforcement of the Americans with Disabilities Act.\u00a0 \u201cIt feels like there has been no let up,\u201d she said. \u201cPeople\u2019s threshold to take on more is lower, but in an ideal world, we wouldn\u2019t be fighting for any of our rights.\u201d<\/p>\n

\"Breaker<\/figure>\n

Candice \u201cCJ\u201d Walker<\/h3>\n

Age: 42
<\/strong>Location: Virginia
<\/strong>Chronic conditions\/disabilities: Chronic hives, iron-deficiency anemia, latent autoimmune diabetes in adults (LADA), disordered eating, depression<\/strong><\/p>\n

CJ Walker\u2019s life with illness started with a sudden onset of chronic hives, followed by a diagnosis of iron-deficiency anemia at 37. After six months of treatment, she went for a follow-up visit. Her blood sugar levels and her A1C were off, and a doctor diagnosed her with type 2 diabetes in 2019.<\/p>\n

\u201cIt was a surprise, first off. I\u2019ve always felt that something just wasn\u2019t right because I was very active. I was eating a moderately low-carb diet at the time, because I was diagnosed with gestational diabetes for two out of my three [pregnancies].\u201d<\/p>\n

Walker was also 99 pounds \u2014 underweight, with a low BMI. She tapped into online diabetes forums and kept finding others who were diagnosed with Type 2 but had strange symptoms or stopped responding to treatment. It was their posts that led her to realize she didn\u2019t have type 2 diabetes, but another condition called latent autoimmune diabetes in adults.<\/p>\n

She also discovered she had orthorexia, a type of disordered eating, and began receiving treatment for that condition. All the while, Walker was raising and homeschooling three children, one of whom has autism.<\/p>\n

In 2020, Walker\u2019s older sister died, sending her into a depression that made it even more difficult to chart a path forward with chronic illness.<\/p>\n

Walker\u2019s sister, who also had diabetes, was her accountability partner. \u201cWe checked up on each other, making sure that we were taking care of ourselves.\u201d Now, she relies on her other family members.<\/p>\n

Her diagnosis \u2014 and her awareness that diabetes runs on both sides of her family \u2014 has become an integral part of how Walker parents. \u201cI had to teach my kids, for example, what to look out for when it comes to me experiencing complications from diabetes. If my blood sugar, in particular, is too low, I could feel that; I cannot feel my highs at all. So I had to teach them what to look out for so they know what to do.\u201d<\/p>\n

\u201cMy youngest would come into the room if he sees me resting out or something like that. He would ask me, \u2018Mommy, are you okay? Do you want some water? Do you want something to eat?\u2019 So he knows exactly what to look out for if he comes into a room, if he sees me really exhausted.\u201d<\/p>\n

\"Breaker<\/figure>\n

Linda Goodliffe<\/h3>\n

Age: 52
<\/strong>Location: North Carolina
<\/strong>Disabilities: Immunoglobulin (IgG) deficiency, Hashimoto\u2019s thyroiditis \u2014 an autoimmune disease that occurs when the body makes antibodies that attacks the cells in the thyroid, PCOS, endometriosis, PTSD, ADHD<\/strong><\/p>\n

Linda Goodliffe is a retired Navy medic who worked in postpartum care in a military hospital for years, and longed to have children. But she was one of a growing subset of active-duty military members and veterans who have experienced infertility.<\/p>\n

Of all the disabilities and disorders with which doctors have diagnosed her, she said, PCOS, which caused her infertility, was the hardest to take. Her health issues began in 1992, and she spent years trying to pinpoint diagnoses. But by the time she was diagnosed with infertility, she was in so much pain she thought she was going to die. \u201cInfertility is a long, hard, trudge through hell,\u201d said Goodliffe, who estimated she spent $6,000 trying to get pregnant without a partner before finding out she couldn\u2019t bear children. \u201cWhen you get that happy ending, it\u2019s all worth it, but if you don\u2019t, it\u2019s simply a long, hard trudge through hell. And you\u2019re all alone in your trudge.\u201d<\/p>\n

Goodliffe believes her disabilities, none of which are hereditary, are the result of exposure to toxins during her service during Operation Desert Shield. She was diagnosed in approximately 2010 with PCOS and Hashimoto\u2019s thyroiditis.<\/p>\n

\u201cI would never have dealt with infertility if I had never joined the military. I wouldn\u2019t have been exposed to toxins,\u201d Goodliffe said. \u201cThere\u2019s a line of demarcation in my life. When I worked on postpartum and in labor and delivery, I used to dream about being pregnant every night. But my immune and reproductive systems have not been the same since 1992.\u201d<\/p>\n

When she entered the military, Goodliffe said she was\u00a0 \u201cthe queen of powering through anything.\u201d She credits her military training for teaching her behavior modifications for her ADHD, and says part of the reasons she and other veterans have not received adequate medical care for their conditions is because the Department of Veterans Affairs\u2019 system is so cumbersome. In particular, she said, she believes she would have gotten more personalized care for her complex set of diagnoses if she had gone outside of the VA and to a research hospital.<\/p>\n

But she is hopeful that the recently-passed PACT Act, which expands benefits for veterans exposed to toxins, will help her and others receive the care they need. Goodlife, who recently opened a bakery in North Carolina with her mother,\u00a0 hopes to one day expand her family through adoption.<\/p>\n

Correction, Jan. 4, 2023:<\/strong> A previous version of this story misspelled Candice \u201cCJ\u201d Walker\u2019s name.\u00a0<\/em><\/p>\n<\/div>\n