Shauna Rae: How The World Views Disabled Women In Their Reproductive Health And Motherhood Practices – And What Changes Need To Be Made In Oder To Make Disabled Lives Easier

Getting to write about Lily Collins’ surrogacy journey and infertility as a whole in my previous blog entry reminded me so much about a podcast episode I previously watched with Shauna Rae. For those of you that don’t know, Rae is a reality star who looks like an 8-year-old girl but is actually in her mid-20’s. After having gone through growth hormones on-and-off, she was ultimately diagnosed with pituitary dwarfism at the age of sixteen, a side-effect of her brain cancer and subsequent chemotherapy. Rae had a form of cancer as a young child, which stunted the growth of her pituitary gland. It resulted in pituitary dwarfism, the condition that keeps her under 4 feet tall and appearing as a child.

In 2023, Rae opened up about the hardships she’d faced while being treated like a 3-year-old even though she was in her 20’s. The TLC reality star recalled on her Instagram page, ‘So, getting things like kids’ menus, kids’ cups, crayons at restaurants is common. It’s less common, I’ve noticed, when I’m out with my friends — very common when I’m out with older sisters or my family in general. I think it’s just the environment I’m around and the way I carry myself that sometimes affects it, but I also I think if they see you in a family environment, they see a short-statured person, they just immediately think ‘child’ but it happens all the time. It was just [stepfather] Mark [Schrankel] and I and the waiter had given me a kids’ menu, crayons [and] tried to give me a kids’ cup. And I was just kind of like, ‘Yeah, this is fine.’ Like, Mark and I will color, will play the dot game or whatever it’s called, we’ll play connect the dots, will just play tic-tac-toe and stuff. I think it got to a point where it was just like, a little weird because I don’t know anyone that does this with children in general, but the person at the register, the cashier, told me I was doing such a good job and was very surprised I was gonna pay. Then when I went to take care of the credit card part of it, she taught me how to use the credit card machine and I mean, simply explain step-by-step, like you would to a 3-year-old and I just kind of let it slide. I just don’t wanna cause a fuss so I continued getting through the machine [tutorial]. I told her to have a good day and she’s like, ‘Yes, you too, but you know what’s great? When you get older, because now you know how to use a credit card machine, you can come work for us.’ And I was like, ‘Oh Jesus, can I just please go? Please, please, please,’ because it makes me uncomfortable to be in those extreme situations.’ And in the caption of the post, Rae wrote, ‘This is something that happens to me very often, and use to be an every time I went out occurrence. I’m hoping that by raising awareness for my type of dwarfism and disability, that it will help the world and us as humans be more open minded when it comes to the variety of people we have in our world. Everyone deserves to be treated the same no matter their difference.’

It’s hard to living and being part of a society that doesn’t fully accept your differences. It’s not so much as people’s unwillingness to learn; but more of the inability or lack of interest to unlearn something that they were made to believe for a long time. In my own life, I’ve struggled with it my entire life. Perhaps that’s why I’ve had such a difficult time opening my heart to others. That’s why I had such a difficult time in my friendships and now I don’t have a lot of friends. That’s why I had such a hard time in my romantic past. When people see me, they see a ‘cripple’. They see someone who constantly needs help; needs saving. They see someone who’s incapable. It’s just not me. Time and time again, I’ve been put in a box throughout my entire life. Very few people see that. My husband was one of the only people in my life who wasn’t my family that did see that in me. That’s why our relationship has worked so well for more than a decade now.

Dating in general as a disabled woman, particularly as a disabled woman, can be complex in itself. There are be so many factors involved with the realities of dating associated to the disability scene – such as the dangers of online dating, sex, and revealing to someone of the disability. I’ve had mishaps in the online dating world and sex being used as a weapon due to my cerebral palsy in my dating days. But revealing my disability to the person I was with was never an issue. Somehow, that part of the conversation with the people I’ve dated was always embraced. My husband noticed my limp when we first met. I eventually told him I have cerebral palsy on our first date. I even made him google it. I also told him that this part of my life didn’t define me, and I gave him a choice – to leave or continue to court me and see for himself how the disability didn’t define me. Without hesitation and reservation, he decided to stay. I also know disabled women in my own life, who have the same disability as me, that weren’t allowed to date in their 20’s due to the fear that they’d get hurt while they were out by the people they’d date. I understand, though. I was allowed to date and be out and about, and I got hurt. Women who don’t have disabilities get hurt too, but getting hurt is much more likely to happen to a disabled woman.

Another factor many people like me have to grapple with, like Rae has, and openly so, is infertility and the discrimination and prejudice that come with it. I personally never faced them, but so many others do. Pregnancy in itself is hard for an average person – swelling body, welling emotions, surging hormones. For people with chronic conditions and other disabilities like mine, the experience can be even more jarring, full of additional barriers, stigma, and risks. People with disabilities are far less likely to be taught comprehensive sexual education and given access to contraceptives, and they are more likely to have unintended pregnancies. It’s mostly due to the automatic assumption that people with disabilities are incapable of having sex. Disabled women are then more likely to have adverse birth outcomes and to experience pregnancy complications, in part because they often are on medications that interact in negative ways during pregnancy.

Though I’d never myself faced such discrimination and prejudice in my own sexual experience or (in)fertility journey due to me having cerebral palsy, I did face neglect by the medical system in the midst of my seizure disorder. It was during my pregnancy with my son. I had two grand-mal seizures. One at 18 weeks, and the other at 33 weeks. Following my seizure at 33 weeks, I called my neurologist to ask for an earlier appointment than what was originally scheduled. I overheard on the phone the neurologist telling his secretary that he had no time for ‘this sh*t’, and that it wasn’t his problem. I wasn’t disabled enough to not have the ability to defend myself, so I waited for my already-scheduled appointment and called him out on HIS sh*t.

Historically speaking, disabled and chronically ill people, especially people of color, were restricted from making any choices about their health and childbearing. That kind of discrimination even persists to this day. Whether or not disabled people can be good parents remains to be questionable by courts and child welfare agencies. Knowing this made me question whether I should become a mother in the first place. But I didn’t let society tell me how to live my life. Nevertheless, it was still something that was heavily on my mind. I remember vividly when I was out with a friend with my son, I felt like I was seizing. I took my friend by the hand and whispered in her ear that if I had a seizure, to make sure no one called 9-1-1.

The fact of the matter is, people with disabilities have the same sexual and reproductive health needs and rights as anyone else, but often face barriers in accessing family planning services. This can lead to unintended pregnancies, short interval pregnancies, and unsafe abortions. Strengthening family planning services and prioritizing women with disabilities for modern contraception is crucial. To put things into perspective:

Barriers to Access: 

• Lack of Education and Information: Many people with disabilities are not provided with adequate sexual and reproductive health information, hindering their ability to make informed choices. 
• Accessibility Barriers: Physical barriers in clinics, transportation issues, and communication challenges can make it difficult for people with disabilities to access services. 
• Attitude of Healthcare Providers: Some healthcare providers may have limited understanding of disabilities or hold negative stereotypes, impacting the quality of care received. 
• Financial Constraints: High costs for family planning services can be a barrier for some individuals with disabilities. 
• Legal and Systemic Barriers: Policies and practices that discriminate against individuals with disabilities can also create barriers to accessing services. 

Addressing the Issue: 

• Comprehensive Education: Providing sexual and reproductive health education to people with disabilities, including those with intellectual disabilities, is essential. 
• Accessible Services: Ensuring that clinics and services are physically accessible, with appropriate communication supports and resources, is crucial. 
• Training Healthcare Providers: Providing training to healthcare providers on disability awareness and best practices for providing inclusive care is necessary. 
• Advocacy and Policy Change: Working to change policies and practices that discriminate against people with disabilities and promote their inclusion in family planning programs is essential. 
• Supported Decision-Making: When individuals with disabilities may need additional support to make informed decisions about their reproductive health, a process of supported decision-making can be implemented. 
• Focus on Rights and Autonomy: Ensuring that decisions about family planning are made with the full and informed consent of the individual, free from coercion, is paramount. 

Why it Matters: 

• Sexual and Reproductive Health Rights: People with disabilities have the right to make their own decisions about their sexual and reproductive health, including family planning. 
• Inclusion and Equality: Ensuring that people with disabilities have access to family planning services is a matter of social justice and equality. 
• Improved Health Outcomes: Access to family planning can help prevent unintended pregnancies, improve maternal and child health outcomes, and reduce the risk of unsafe abortions. 

But can you imagine being a 25-year-old woman and learning that you your chances of having a child are slim to none because of a medical condition in which its treatment and medical neglect caused it? That’s exactly what happened to Shauna Rae. Initially, throughout treatment, her parents were told the treatment wouldn’t affect her fertility, but no one actually cared to check if it were true. She doesn’t know what chemotherapy she had when she was first diagnosed, and her mother wasn’t ever told. As an adult, she went to a doctor and was told that some chemotherapies affect ovaries and how they work. It was something Rae herself didn’t know until that appointment. According to her doctor, her infertility had to do with her growth hormones, as well as the chemotherapy. When she went to doctors in the past, she’d always been told she could PROBABLY have a baby, but she’d have to have a C-section.

Knowing her reproductive health was important to Rae. Not necessarily for the sake of having children one day, but for dating purposes. If she was dating someone who wanted to have biological children of their own and she couldn’t give it to them, she’d need to communicate that. In a confessional from her show, I Am Shauna Rae, she said while holding back tears, ‘I’ve been told I can’t do a lot of things my entire life. So being told I can’t do another thing might make me a little angry.’ To see her tear up talking about children was heartbreaking, but also something I could relate to so deeply. So many people today have everything they ever wanted and probably never think about.

It’s not about the ability to have a child. Instead, it’s about not having the choice to have a child should she ever wish to. It’s just heartbreaking and yet another case of ableism. Had there been more support available for disabled people and their parents, it wouldn’t be such an issue. That specific choice was taken away from Rae due to the neglect she and her parents faced by the medical system during her cancer treatments. Rae’s mother didn’t even know what type of therapy her daughter was going through, and that’s problematic in itself. As a disabled person, time and time again you’re told that you can’t do anything in life; that you can’t achieve anything in life. Being told that you having children is (literally) yet another thing you can’t do is… tragic.

Family planning as a disabled person can be harsh. It most certainly was for me. There’s so much thought and planning that goes into it. So many questions that I, as the one getting pregnant, needed answers to: will my body be able to handle IVF treatments? Will IVF treatments cause me to have seizures? Will I need to increase my medication dosage during IVF treatments? will by disabled body be able to carry a baby full term? how will a pregnancy affect my disabled body? what will happen to me and the embryo/fetus if I have a seizure during pregnancy? Will my pill intake increase during pregnancy, and if so, by how much? And then, there were questions for after the baby was born: how will change a diaper? how will put clothes on and off him? how will I bathe him? how will I hold him? how will the sleepless nights affect my seizure frequency?

I never got proper answers to the questions. I figured them out on my own, especially the ones for after the baby was born. I was just fortunate that I had a great OBGYN taking safe of me. I know many women who didn’t have that privilege while pregnant. In hindsight, though, I’m glad I didn’t have any help in that regards because it proved to me that I COULD do it all; and I could it all on my own, without any help. I proved all my doubters wrong; particularly my father-in-law, who continuously argued in why my husband shouldn’t end up with someone like me that I’d never be able to get pregnant or bear children for him; let alone take of his children without his ‘supervision’. But that didn’t matter. I had nothing to prove to him or anyone else who doubted me in my entire life. More than anything, I had to prove that to myself.

The thing about having a physical disability AND a chronic illness like myself is that you figure sh*t out no matter what. You have to choice but to do it…no matter what. It wasn’t like I had the choice to return the baby if I didn’t like the experience of being pregnant or having a newborn baby; or now a toddler. In my mind, I could do anything an able-bodied individual could do. I just had to find different ways to do them. I always compare anything I do to a math problem – there’s always one answer, but there are different ways to solve the problem. Many disabled women said that they were met with stares and disgusting ableist comments when they see them in public with their children. In her October 2024 article for Metro, Elaine Hughes, a disability specialist who has cerebral palsy and chronic pain, fatigue and osteoarthritis, wrote that as she nursed her, another woman looked her, gawping, and said to her, ‘You should never have been allowed to have children. What quality of life will your baby have with a crippled mother?’

It’s a cruel world we live in. Able-bodied people underestimating people with disabilities is really nothing new. It’s a tale as old as time. But to tell a woman she shouldn’t have been allowed to have her child because yours questioning what quality of life her child will have because of it is absolutely cruel. I myself never faced such cruelty. But if I did and someone had questioned my son’s quality of life, I’d say this: My son is 2, and he has a great life so far. He smiles from ear-to-ear all day long. He laughs at the smallest details. His eyes light up when he sees me. His first words were ‘I love you’ to me. He’s the kindest, most patient, and most considerate, most empathetic person I ever met. He always goes out of his way to help others, even if not asked to. Part of it is because he has a disabled mamma, and it’s the most beautiful thing to witness.

Motherhood, as well as the journey to motherhood, is so hard, but it’s even harder as a disabled mother. Both research and anecdotal evidence suggests that women with disabilities face systemic as well as attitudinal barriers that limit their perceived ability to mother. The world doesn’t make things easier for disabled women. And it’s not just the medical system I’m talking about, but the world in itself. Many places aren’t m built in a way that makes it easy for women with disabilities to engage with their children. Most schools, parks, and daycares aren’t accessible. They assume ability. I only realized this once I had my son. I never realized just how much of a hassle it’d be for me to do what seemed to be like the most simple thing – take my son out to the park. Luckily, help was always available from kind strangers to do such things as put him in the toddler swing and out. As a mom, though, it was so disappointing to me that I needed help with a small little thing that to most seems easy. It’s true that the world doesn’t accommodate people with disabilities. The disabled person has to adapt and figure sh*t out by his or her self, including the work it takes to be a parent. Parenting while living with cerebral palsy requires adaptability and may present unique challenges, but is still very achievable with the right support and resources. It’s important to focus on both the child’s well-being and the parent’s own mental and physical health. To put things into perspective:

Key Considerations for Parenting with Cerebral Palsy: 

• Physical Challenges: CP can impact mobility, making tasks like bathing, dressing, and carrying a child more difficult. Support from caregivers or adaptive equipment may be necessary. 
• Emotional and Mental Health: CP can be stressful, so it’s crucial to prioritize mental health. Seeking support from therapists, support groups, or other parents navigating similar situations can help. 
• Advocacy and Education: Parenting with a disability requires advocating for your child’s needs in schools, healthcare settings, and other environments. Knowledge about CP and available resources is essential. 
• Adapting Activities: Some activities may need to be modified to accommodate CP. For example, playdates with other children can be adapted to include interests and skills shared by the child with CP. 
• Seeking Support: Don’t hesitate to ask for help from family, friends, or professional caregivers. 
• Focusing on Strengths: It’s important to remember that CP doesn’t define a child’s capabilities. Celebrate their successes and work with professionals to help them develop their strengths. 

Specific Challenges and Solutions: 

• Bathing and Dressing: You may need to adjust your approach to bathing and dressing. Using adaptive equipment like a bathing chair, or a modified dressing system can help. 
• Carrying and Lifting: Consider using baby carriers, slings, or other carrying aids to help with mobility. If you’re struggling with heavy lifting, seek assistance from others. 
• Getting Around: Use accessible strollers, adapted vehicles, or public transportation to get around. Explore options for getting around independently. 
• Dealing with Spasms or Muscle Tension: Consider incorporating therapies like massage, physical therapy, or medication to manage spasms or muscle tension. This can help with comfort and mobility. 

Being a mother to my son is the most beautiful, rewarding, liberating experience of my entire life. It comes with its own set of challenges; challenges that an average able-bodied woman just doesn’t grasp. When I asked my friend to make sure no one called 9-1-1 in the case of me having a seizure because my son could be taken away, she said she’d make sure of it, but she also rolled her eyes and questioned whether anyone would actually take him away.

There’s no distinct rule that disabled people can’t have sex. There’s no distinct rule that disabled women can’t get pregnant. There’s no distinct rule that disabled women can’t get through 9 months of pregnancy. There’s no distinct rule that says disabled women can’t give birth. There’s no distinct rule that says disabled people aren’t capable to parent. Parenting with a disability is achievable and nurtures strong families and compassionate children. Disability is only one factor of how or if disabled people parent, but being disabled does not determine how great of a parent they will be. So why can’t the entire world adapt to this factor too? Why do we, disabled women, have to be the ones who have to adapt to a world that isn’t meant for us; one that isn’t kind to us; one that isn’t on our side; one that tells us we should be afraid of and constantly looking over our shoulders of?

The first couple of years of motherhood were brutal. They were scary. Allie Schmidt, a disabled life coach said it best. She told Medium, ‘From the perspective of a mom with a physical disability, the first couple of years are brutal and your mental health will have many ups [and] downs. However, with each passing year, it gets easier because [your child] won’t rely on you as much. [Inevitably], your disability doesn’t actually have that much of an impact on the relationship with your child.’ My son looks at my affected hand and doesn’t treat it any different. He simply sees it as something being a part of who I am, but he loves me just the same as if it looked the same as my non-affected hand. He sees me for who I am – the one who loves him the most. My relationship with my son is no different than that of any other boy mom. Its uniqueness is that my son witnesses the adaptability to the littlest of things a disabled woman has to make in the real-world.

I’m know I’m raising my son to be one heck of an open-minded and open-hearted young man. He will change the world one day. But I’m also not here to sugarcoat the difficulties disabled people, particularly disabled women, face in a world filled with people with ableist mindsets. Disabled parents face numerous challenges, including societal bias, limited support systems, and financial hardship. These challenges can impact their ability to work, find affordable childcare, and navigate the healthcare and educational systems. Furthermore, they may experience stigma, discrimination, and even face potential loss of custody of their children. To break it down more thoroughly:

Specific Challenges: 

• Financial Difficulties: Parents with disabilities may struggle with food insecurity, rent or mortgage payments, and housing conditions, even with public benefits. 
• Limited Access to Services: They may face barriers in accessing childcare, special education services, and other support programs for their children and themselves. 
• Stigma and Discrimination: Societal attitudes and discrimination can negatively impact their parenting role and their ability to participate fully in their children’s lives. 
• Workplace Challenges: Lack of understanding and accommodations in the workplace can make it difficult for them to maintain employment, particularly if they have complex needs or a need for flexible scheduling. 
• Emotional and Mental Health: The challenges of parenting with a disability can be emotionally taxing, leading to stress, anxiety, and even depression. 
• Child Welfare Interactions: Parents with disabilities are more likely to have interactions with the child welfare system, including reports of abuse or neglect, which can lead to foster care placement and loss of parental rights. 
• Physical and Cognitive Challenges: Parents with physical disabilities may face challenges with physical activities, such as carrying a child or participating in sports, while parents with cognitive disabilities may struggle with tasks like managing finances or providing academic support. 
• Limited Social Support: Isolation and lack of social connections can further exacerbate the challenges of parenting with a disability. 

Addressing the Challenges: 

• Increased Advocacy and Awareness: Raising awareness about the challenges faced by disabled parents and advocating for policy changes can help to improve their lives. 
• Improved Access to Services: Expanding access to affordable childcare, special education, and other support programs is crucial. 
• Stigma Reduction and Education: Addressing societal attitudes and misconceptions about disability can help reduce stigma and discrimination. 
• Workplace Accommodations and Support: Ensuring that workplaces are inclusive and accommodating for disabled parents is essential for their employment and financial stability. 
• Mental Health Support: Providing mental health services and support for disabled parents is vital for their well-being. 
• Child Welfare Reform: Reforming child welfare systems to ensure that they treat disabled parents fairly and with respect is crucial to prevent unnecessary interventions. 

When Shauna Rae first went public with her then-boyfriend, Dan Swygart, in 2023, they both naturally got a lot of backlash; him in particular, for dating someone who looked like a child due to something that she can’t even control. It explains why she now chooses to keep her current boyfriend’s identity a secret. Swygart defended his relationship with Rae by saying, ‘Me and Shauna are still just good friends getting to know each other. But I think it’s absolutely disgusting the attitude of some people. She’s been through so much in life. She survived cancer as a child, she’s always felt different and been treated different by society. But how dare you take away her right, her human right, to have a connection, a friendship, a relationship with someone else? Who are you to say that she can’t have that. I cannot believe some people who deny her the right to have a  friendship or connection with someone else. She is a human being, she is a cancer survivor, she’s got disability, she had dwarfism. Who are you to take away her right to have a friendship and connection with someone? How dare you? How dare you?’

This is a man who was raised right by his parents, and I should only hope that my son will have the same views as him when he’s that age. But what he said was also a great testament to people, women, with disabilities. Were people. We’re just as human as everyone else. And we should be treated as such by society. Whether it’s our educational rights, working rights, reproductive health, childcare, it doesn’t f*cking matter. We should ALL be treated equally; with the same amount of respect as the next person, and it shouldn’t be automatically assumed that we’re incapable. Period. Is that really too much to ask?