We Are Leaving Disabled Parents Out Of The Story

“Will I have children?” is a question often hedged on romantic compatibility with future partners, and not one I’d ever actively asked myself. I was given a partial answer to the question at 26 — not when I met my future husband, but when I consulted with a geneticist.

I’d had symptoms of a degenerative disease for my whole life — pituitary dwarfism that required human growth hormone shots, joints that dislocated randomly and unexpectedly, legal blindness in one eye, chronic pain — but didn’t know I had hypermobile Ehlers-Danlos Syndrome (hEDS) until that geneticist told me.

My disorder, hEDS, is one type in a family of collagen disorders; it causes mutations in the way your body produces collagen. Collagen is the brick and mortar of the body, the building blocks for organs, muscles, tendons. It affects every single structure in your body, and the experience is unique from affected patient to affected patient, which makes diagnosis difficult.

Along with the diagnosis came the news that hEDS was incurable and it had a 50% heritability rate. This meant that any biological kids I carried to term had a 50/50 shot of being diagnosed with the same condition. I struggled with that knowledge for years, unsure of whether it was fair for me to make a decision that might put any future children in jeopardy of living in severe pain.

After all, hEDS existed on a spectrum: there was always the possibility that if they had it as well, it wouldn’t be anywhere near as painful as my experience. Hell, they might not even end up with it at all.

But within all the questions was the reality of being diagnosed with hEDS: I had a new understanding of what it means to be disabled, especially as someone who didn’t “look” the part. I also had an incurable, chronic illness that those around me didn’t know existed unless I told them. And I had a lot to learn about what being disabled would mean to my possible future as a parent — and what being a disabled parent really meant.

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Mischa Stanton, a 27-year-old living in Los Angeles who uses they/them pronouns, understands the difficulty of deciding whether or not to potentially inflict pain on a future child. They have a rare type of EDS as well — Periodontal Ehlers-Danlos Syndrome (pEDS). For them, pEDS causes joint dislocation and chronic pain, as well as premature tooth loss. They were just recently fitted with a full set of dentures after losing the last of their teeth.

“Because I have a rare variation of the disorder, the precise genetic cause is still currently unknown. There is no way to screen for it in my offspring,” Stanton tells Romper. “I refuse to put an innocent child through what I went through. I don’t think I could ethically condemn another human being to that kind of pain and suffering, not while the genetic cause [of pEDS] is still unknown and untreatable.”

Stanton is just one of 61 million disabled adults in the U.S., of which an estimated 4.1 million are parents with children under the age of 18 living at home with them (per data compiled by U.C.S.F. in 2012 as part of Through the Looking Glass’ National Center on Parents with Disabilities). That’s roughly 1.2% of the U.S. population. But, due to a lack of research, these numbers most likely significantly underestimate the number of disabled parents.

The way in which disability affects parenthood is often largely invisible.

Early in my diagnosis, I vacillated about the decision to have kids, especially once I realized my mother was also a hEDS patient. But then I started to learn more about the syndrome. I found that pregnancy for people with hEDS is often extremely difficult, leading to higher rates of premature birth or even miscarriages, according to an observational study published in Orphanet Journal of Rare Diseases. I learned that some people spent their last trimester on bed rest with dislocated hips that never quite went back to normal. I was religious about my birth control; because hEDS made my tissues friable and delicate, the likelihood of perforation during a surgical procedure such as an abortion was high. And anyways, I didn’t have a partner that I wanted to raise kids with yet.

When I met my future husband, I told him within the first two weeks of us dating about hEDS and how it might affect my future as a parent. He held my hand while I cried, frozen with indecision. Two years into our relationship, I had to go off of birth control because of a previously undiagnosed blood disorder that significantly increased my likelihood of throwing a clot, alongside my existing diagnosis of endometriosis, fibroids, and ovarian cysts. A year after that, he was with me when I woke up from a total hysterectomy that had removed my uterus, both fallopian tubes, one ovary, and my cervix. Afterwards, my surgeon showed me pictures of her instruments perforating the fragile tissue of my uterus. Unusually, the fibroids — normally only affecting the uterus — had invaded my fallopian tubes, which may have affected my ability to get pregnant. Endometriosis wouldn’t have helped; it goes hand-in-hand with infertility in 50 percent of cases.

Whether I liked it or not, my disability had permanently and irrevocably affected my ability to biologically reproduce. Much like my invisible disability — utterly unseen from the surface — the way in which disability affects parenthood is often largely invisible.

Stanton knows the feeling. “I honestly don’t really feel I got to make the decision for myself,” they mused. “It kinda feels like it got made for me.”

Like Stanton, Casey Lucas, a 31-year-old woman who was born in Napa Valley, Calif., but now lives in New Zealand, understands the way it feels to have no control over one of the most basic human experiences. “There is... a sense of lost agency, of a choice being taken away,” explains Lucas. “Losing an option still feels like losing an option even if it’s a path I wouldn’t take.”

Lucas lives with a condition called palindromic rheumatism (PR), a form of arthritis that’s often associated with other autoimmune rheumatic diseases like rheumatoid arthritis and lupus. During previous flares, “It felt like every object I picked up was coated in a layer of broken glass,” says Lucas.

While the underlying cause for PR remains unknown, Lucas’ flares were aggravated by her menstrual cycle, which she ended up treating with an aggressive treatment regime called methotrexate (MTX). MTX is a common treatment for rheumatism disorders and types of arthritis, but it’s also an anti-folate medication. “Folic acid is vital in foetal development,” Lucas explains. “MTX runs the risk of causing serious birth defects… and [its use] can also end pregnancies.” There are treatment options that don’t include the use of MTX, but many aren’t safe for pregnancy, either.

Disabled people who become parents have historically faced intense discrimination.

“It’s sobering to think that if I’d tried to get pregnant, I would have been stonewalled by my treatments at every turn,” says Lucas. “Even though I am content with my current situation, it was not a choice I got to make, and losing the ability to make that choice for myself still leaves me feeling a little trapped at times.”

Disabled people who become parents have historically faced intense discrimination, which remains an obstacle for disabled people who want to grow their families without biologically reproducing — regardless of whether that choice is made for them or by them.

Many people, disabled and nondisabled, who cannot get pregnant for any reason turn to surrogacy as a solution. Of course, in some states, surrogacy isn’t even an option: Arizona, Indiana, and Nebraska have made surrogacy contracts legally unenforceable. Four other states (and D.C.) have made surrogacy outright illegal. Where it is legal, the costs creep towards six figures. Unfortunately, if you’re disabled in the U.S., you’re also twice as likely to be poor as someone who isn’t disabled, as NPR has reported. It’s also significantly more likely that you’ll be unemployed: fewer than 1 in 5 disabled adults are employed compared to nearly 65 percent of nondisabled adults. According to the World Bank, the cost of living is also higher: disabled people are 50 percent more likely to face disruptive health expenditures.

Adoption is the next most obvious choice for bringing a child into your life. It’s estimated that there are over 400,000 children in foster care; 102,000 of whom are waiting to be adopted. And yet, the process of adoption is significantly more fraught for disabled people than it is for nondisabled people. Disabled people regularly encounter discriminatory practices that eliminate them as potential parents solely due to their disabilities.

To start, many states do not include anti-discrimination provisions in their laws and regulations covering adoption and foster care. As late as 2011, Virginia approved regulations allowing adoption agencies to use disability as a sole reason to deny persons the ability to adopt, as South Florida Gay News reported. Twenty-one states include nondiscrimination provisions for other protected groups in their adoption statutes and regulations, but fully omit nondiscrimination based on disability. Disabled people with other intersectional minority statuses, such as being disabled people of color, may face even higher levels of discrimination through the adoption and foster care process. Only 15 states have laws protecting the parental rights of disabled people, according to Disability Is A Strength: Stories of Disabled Parents And Their Families.

And, even if prospective parents somehow manage to navigate a system that’s rife with rampant ableism, money once more becomes an issue. While adopting from state foster-care programs may mean costs are covered by the state, that’s not always the case. Home studies can cost up to $3,000, while the average cost for international adoption ranges from $20,000 to $40,000.

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Jean Shepard, 37, has been with her partner for 10 years and has always wanted children. “When I was a teenager, that was one thing that I knew about myself, always. I wanted to be a mom. My friends always joked that if they had children, they would drop them off on my doorstep.”

In a discriminatory, inaccessible world, disability forces us to think differently.

Shepard and her partner spend time as an aunt and “ankle” — their gender-neutral term for aunt/uncle — to nieces and nephews, but it’s not the same experience as caring for their own child. Shepard has debilitating migraines, and needs to qualify as “disabled” in order to receive benefits, but being unemployed and on benefits precludes having the money to pursue adoption.

“I look at the process and it seems like it will take so long,” Shepard says. “I start to feel a little despair because I’m like, ‘Will it ever happen?’ When [my partner and I] talk about [adoption], we start thinking through some of the same logistics and we both come through with the same concerns, but without a whole lot of solutions.”

“My best friend in the whole world just had a baby four months ago,” says Shepard. “She straight up was like, ‘This has to be really hard for you.’”

The complicated process of becoming a parent (or, perhaps more often, not) as a disabled person is a topic that hasn’t received much coverage until recently.

But just because the odds may seem stacked against us doesn’t mean disabled people can’t become, or aren’t, successful, stupendous parents. In a discriminatory, inaccessible world, disability forces us to think differently, to approach problems with a unique, problem-solving mindset — exactly the kind of flexible, quick-thinking that’s required for parenting. Disabled people spend their entire lives challenging negative stigmas and stereotypes about existing in a world not meant for us. Fortunately, a world of internet connectivity also means more resources: The Disabled Parenting Project is an online space for sharing experiences, advice, and conversations among disabled parents and those considering parenthood. “We’ve Got This: Parenting with a Disability” is a video series sharing stories of disabled parents that accurately represent family life.

“There are so many ways in which everyday ableism bumps up against our traditional ideas of reproductive autonomy,” says Lucas, “and it isn’t always as overt as being forcibly sterilized or treated with open condescension.”

Sometimes it’s as subtle as never having considered that a question like “Will I have children?” applies to all of us.