Navigating a “one-size-fits-most” world can be tough — especially when you are living with a physical disability.
It’s a situation Christine DuBois and Brittany Orians, two Michigan moms with cerebral palsy, know all too well.
DuBois, a mom of two living in Troy, was diagnosed at age 2 with cerebral palsy, likely caused by a brain bleed in infancy. She is unable to walk without forearm crutches and has faced down strangers’ judgment and even flat-out contempt from medical personnel who didn’t think a woman with a disability should have a baby.
“People don’t expect you to be a disabled parent,” she says. “When I was visibly pregnant, strangers would walk up to me and ask very intimate questions (and) for every person that didn’t ask the question, you heard the whisperers, so for two years, I didn’t go out without someone.”
These reactions didn’t stop once her daughter was born, either.
“I had a nurse that didn’t think I should parent (so) I had social workers in my room about seven times after my daughter was born,” she says. Then “the lactation consultant basically said it’s hard to breastfeed with a disability” and left.
Her experience having her son, 3-year-old Miles, was a bit better, she says, but she still experiences judgment when out with her kids.
“I don’t mind people asking questions (and) I try to answer people’s question honestly or be engaging because they want to learn, but there are other times when I want to be a mom,” she says. “What’s most frustrating is when people assume I can’t do things and grab me or grab my kids.”
While cerebral palsy causes weakness in all four of DuBois’ limbs, Brittany Orians, a mom of one from Okemos, has a spastic form of the disorder, which causes tightness in her muscles that affects the bottom half of her body more than the top.
She was met with similar skepticism when starting her family.
“I (initially) didn’t know if I wanted to get pregnant. With my muscle fatigue and balance, and then adding pregnancy in there, I wasn’t sure that I wanted to do that,” she says. “I set myself up like that because I didn’t want to be disappointed – anytime you bring it up to doctors, you get the ‘I don’t know, we don’t have much experience with it.'”
She changed her mind while attending a small private college in Illinois.
“It was a place where it was small enough and supportive enough that (having kids) didn’t seem too crazy,” she says.
When she did get pregnant, she went to her local OB-GYN, where she learned that they hadn’t seen anyone with cerebral palsy who was pregnant before and weren’t sure if they wanted to see her.
As her pregnancy went on, she faced typical pregnancy ailments not related to cerebral palsy, including extreme morning sickness and balance issues.
“There’s nothing with cerebral palsy that’s dangerous to the baby (or) that will be passed on to them (so) it doesn’t put you at high risk,” she says.
But because of the type of cerebral palsy she has, and the muscle tightness it causes, neither Orians nor her doctors were sure if she could delivery naturally.
“My hamstrings and hip abductors are a tight mess,” she says. “I was having anxiety about it, so when the doctor said C-section, I was comfortable with that.”
Adapting to motherhood
In addition to social stigmas, birthing challenges and the responsibilities that come along with having children, both DuBois and Orians had to learn how to physically care for their kids, too.
The key, DuBois says, was coming up with a solution that worked best for her and her family.
When Dylan was born, for example, DuBois spent most of the time camping on her bed with all of the things she needed to care for her daughter.
“(My husband) would give me all of my supplies and he would leave for work. Then, my mom or dad would stop by so I wasn’t confined to a room – we had a schedule because I couldn’t carry her,” she says.
There was also the issue of finding baby gear that she was able to use to care for her kids.
“Adaptive baby equipment is ridiculously expensive. We used a crib that was highly illegal with a door and it worked perfectly,” DuBois says. “I can’t do snaps (so) they lived in zipped sleepers.”
When Orians couldn’t find equipment that worked for her, she’d tweak the items that she had to make it work.
“People do hacks to their cribs to adapt it because there’s a huge gap in the baby product market. My crib is adaptive, but everything else is ‘normal’ and I’ve learned how to adapt them,” she says. “The main thing I used was discontinued, I found it on Craigslist and it was a detachable bouncer that had wheels.”
And as her daughter gets older and more mobile, Orians continues to look for more equipment she can use in order to care for and keep her safe.
“When she starts walking and following directions, I’m going to have to do something to keep her by me because I can’t run after her, I don’t have that ability, so I’m going to have to do the leashes or something,” she says. “That’s a stigma I’m going to be facing, but it’s either she runs in the street and is hit by a car or is safe with me — and I’m keeping my child safe.”
Despite all the hacks and work to adjust, DuBois admits that there are some things that she just can’t do by herself, which can be tough.
“(Dylan) is really adaptable and (Miles) is coming to be the same way. We’re figuring things out and making changes as we figure things out,” she says. “But I don’t think there’s anything we do that we don’t think about first. There’s (just) a lot of logistics to being disabled … and I’m never going to take my kids to the zoo, just me.”
Talking to the kids
Neither Orians nor DuBois try to hide what cerebral palsy is from their kids. In fact, both of DuBois’ kids are well aware that their mom has cerebral palsy and how it affects her.
“My two kids’ reactions to my disability were very different,” DuBois says. “At 13 months, if you moved my crutch (Dylan) would be hysterical, but the other thinks it’s funny to take it and run.”
DuBois works to keep her kids updated on the latest information on cerebral palsy as a way to equip them. “There is no guidebook for this,” she says, “so I go with my instinct.”
Meanwhile, Orians is planning on having the talk with her daughter when she’s old enough to better understand.
“For her, it’s going to be normal, she’s not going to know any different but if I’m walking through the school hallways, I’m going to have to explain why I can’t carry her,” she says. “I feel bad for her, but I don’t think I’m being unfair to her because she might have more empathy for others (and) have more compassion for others.”
About 764,000 people in the U.S. live with cerebral palsy. It is caused by abnormal development or damage to a developing brain and appears in one out of every 323 kids — making it one of the most common motor disabilities in the world, according to the Centers for Disease Control and Prevention’s Autism and Development Disabilities Monitoring Network.
Resources for Parents with Disabilities
Having a group of people who understand and are willing to help is important for parents living with a disability. To help others find that support, Brittany Orians suggests they:
- Lean on those that try to understand. “Even if your biological family doesn’t support you, but if you have friends and family that do, still go with it,” she says. “Try to have a supportive medical team too, they may not know but they aren’t going to think you’re crazy or write you off.”
- Seek out studies. “I met someone through a study in a focus group and we have similar diagnosis. We ended up becoming friends and we see each other every so often,” she says. “Even things like that can connect you with people and those studies will help us find the tools. (Plus), they’re constantly wanting more and more people.”
- Look for Facebook groups. There are plenty of them out there full of people that have been where you are and are willing to offer support to parents of varying abilities.
Interacting with People who have Disabilities
If you’re not disabled and want to know how you can better interact with and support people who are, Christine DuBois offers these three tips:
- Don’t make assumptions. “There’s so many people that make assumptions about what I can or can’t do and what my family looks like and that can create a bad situation.” Don’t assume a person who is disabled needs your help and recognize that just because a person accomplishes something in a different way from you, doesn’t mean it’s wrong.
- Ask for Consent. Think of a wheelchair or scooter as an extension of the person using it and don’t touch it without asking for their permission.
- Ask questions — but use your judgment. While DuBois says that she will answer questions when asked, it’s not always a good time for questions. Gauge the situation and ask yourself if you’d want to be bothered by a stranger in that moment before asking your question. Consider your question, too. Would you be comfortable answering it if the roles were reversed?