It goes without saying that pregnancy can come with all sorts of unexpected changes and challenges, but for people with disabilities and/or chronic health concerns, those experiences can be understandably heightened.
No two pregnancies are alike, but there’s an added layer of stigma, misconception, and misunderstanding when it comes to pregnant people who are also chronically ill and/or disabled — whether from healthcare providers who don’t offer adequate support or from those around them who ask invasive or inappropriate questions about their bodies or health.
It’s an experience that Mallory Weggemann knows all too well. Weggemann, a Paralympian gold medal swimmer, speaker, author, and business owner, is currently expecting her first child as she prepares to compete at the Para Swimming National Championships in December.
After detailing her experience with in vitro fertilization (IVF) on Instagram, the 33-year-old tells Scary Mommy that her journey to parenthood with her husband Jay has been “filled with blessings and heartache,” sharing that their experiences with infertility and disability have offered them a different perspective than many couples embarking on parenthood.
The Misconceptions Around Pregnancy and Disability
Weggemann wants people to know that disabled people can and do have healthy pregnancies and deliveries, reminding others to refrain from making assumptions about other people’s lived experiences. “Speaking as a woman with a spinal cord injury, I think the biggest misconception surrounding pregnancy with a disability is that my paralysis prevents me from being able to get pregnant,” says Weggemann. “Yes, my husband and I went through IVF, but our infertility journey has nothing to do with my paralysis. In actuality, male infertility is my husband’s circumstance.”
She attributes frequent comments like “Oh, I am so sorry you won’t be able to have children” to people making “assumptions solely based on the fact that I am a wheelchair user.”
“I also think it is important to address the ableism that exists within this conversation,” she adds. “Many times, strangers have seen me as ‘fragile’ in my pregnancy because I am a woman with a disability,” noting that pregnant people are often told they should “just rest” throughout their pregnancies — “then you add disability to it and the meaning of that comment is intensified tenfold,” she says. “Personally, I am a professional athlete, entrepreneur, motivational speaker, and storyteller. I am continuing my training through pregnancy and will be racing at Nationals at 26 weeks pregnant. I travel weekly for work and plan to continue well into my third trimester, as determined by my medical team. Each day I work to grow my business. I do not need to slow down my life simply because I am pregnant. In fact, continuing what my body knows as ‘normal’ is one of the healthiest things that I can do for myself and our little one — and my doctors agree.”
“The problem with comments like ‘You should just rest’ — which seem innocent in nature — are often followed by ‘Is it really safe for someone like you to be doing x, y or z…?’ and those statements are where the ableism lies,” she notes. “Rather than being seen as a person, others are projecting their own unconscious bias and ignorance onto you.”
What Not To Say To Someone Who’s Pregnant and Disabled
Though Weggemann can’t speak for anyone but herself, she wishes people would “think twice” before making “unsolicited comments” — which are often thinly-veiled microaggressions — to those who are pregnant and disabled. “I think it’s important to remember these comments from strangers — while triggering for nearly all pregnant people — often carry an entirely different meaning when said to someone with a disability,” she says.
“Pregnancy isn’t about comparison,” she says. “Every single person’s journey is different. So, telling a pregnant person (especially one who is disabled) something like ‘I totally get it…’ can be more triggering than comforting. I know my circumstance is different, but each time someone tries to ‘normalize’ it as a way of comforting me, it actually does the opposite. Not only does it invalidate the way I feel — which then makes me feel isolated rather than supported — it’s a reminder I don’t see women that look like me celebrated as mothers, and my brain goes down every rabbit hole you can imagine.”
What You Can Say (and Do) to Show Support
“As with any situation, simply ask,” says Weggemann. “We often steer away from asking ‘how can I support you?’ because it feels easier to just say ‘hope all is well.’ But by not asking, we actually end up closing that person off.”
“It’s a catch-22,” she adds. “You want to enjoy the process of pregnancy and not be treated differently or like you’re fragile, but disability and chronic health concerns do change the realities you face in pregnancy, and sometimes you need for that to be acknowledged. I truly think it comes down to asking the questions and taking each individual’s lead on how they want to be treated or supported.”
With her own pregnancy, Weggemann says, “I have to adapt how I physically move around this world as my body changes. I am constantly thinking through not only what becoming a first-time parent looks like but how I adapt parenting for my circumstance while looking to a world that hasn’t created accessibility in parenting for individuals with disabilities. Within that ‘pregnancy glow’ is every contingency we are trying to solve for. So my advice is to simply ask rather than jumping to offer unsolicited advice. Just ask, ‘How can I best support you?’ — then take their lead.”
Though Weggemann has ample support from others in the disability community as well as her healthcare team, she acknowledges the many barriers disabled pregnant people face daily. “One of the biggest struggles people with disabilities face is lack of access to accessible health care. This is a real barrier to quality care and to seeing a path forward. What if each exam or ultrasound room you went into had a table you couldn’t climb onto because it was too high? People don’t realize the amount of forethought and planning it takes to simply make sure you can access your clinic or get on the ultrasound table or the mental energy of having to be that much more educated so you can accurately advocate for yourself.”
Weggemann hopes that sharing her story will help others feel less alone in what they might be experiencing. “For a long time, it felt like society told me that parenthood wasn’t for ‘someone like me,’ but I’ve learned that isn’t my narrative to carry,” she says. “As a woman with a disability, I want the same thing other women want in their journey to motherhood: to be seen, validated, and supported. So let’s stop comparing, let’s stop offering unsolicited advice, let’s stop projecting and shaming. Instead, let’s celebrate. Let’s offer support by meeting others where they are. Let’s validate the uniqueness each pregnancy journey carries. Most of all, let’s extend empathy while knowing we may not truly understand.”