“I am so sorry, but I am hard of hearing and very dependent on lipreading. I find it very difficult to understand on the phone. Can you please speak a bit more loudly?” It was easy to introduce myself on the phone, followed by the same request, each time, for enunciated and loud speech.
Occasionally, I grasped the name of the speaker on the other end. But that might be because I had already read it in the telephone directory.
“Sorry. Currently, I am not hiring anyone. I have no funding.” Easy to follow. “No” and “not” were always simple to comprehend. But trouble arose when the speaker chose to converse with me. I would be stumped.
Was it simply the anxiety of trying to comprehend the forthcoming speech without seeing lips? Was it the American accent? Kind and patient speakers repeated but were still beyond comprehension. Frustrated, I would apologize and that would be the end of our conversation. Nevertheless, I was blessed. No one ever hung up on me. Never. Not from this special “list” that I had created for myself. A labor of love.
Diligently copied and numbered in clean handwriting from that big yellow telephone directory (it was the late eighties), the “list” contained names and telephone numbers of faculty with a description of their research interests at the University of Texas Medical Branch (UTMB), Galveston. A few of these matched my expertise—molecular biology and biochemistry.
One mid-morning in early September 1989, I dialed yet another number from the list. It would be the last for the day. Perhaps I might just get lucky. I was.
A little distracted by my two kids in the adjoining living room, I waited patiently for the phone to be picked up. Bright Texas sunshine poured in through the tall French windows of our large apartment, easily bathing bowls of cereal, milk, and sliced apples set out on the table. My son, Abhishek, raptly observed by his little sister, was feverishly working his fingers on the TV remote. It was time for Mr. Roger’s Neighborhood; breakfast would have to wait.
A voice came on the line and at that exact moment, it struck me that I could inform the speaker about my hearing loss and ask to repeat the question. Only this time, Abhishek would listen for me. Pass the message to me. I would take back the phone and answer the question. A kind of relay system. Maybe, it could extend a conversation?
With no time to explain anything to Abhishek, I hustled him from the TV screen, the phone and its long, twisted cord dragged up through our sparsely furnished living room. Not sure what it was all about, he was, of course, upset about being hauled off from his favorite TV show.
A spur of the moment idea that just might work. Even with no practice, I was optimistic. It did. The speaker and I had a brief conversation.
Thankfully, this was not an everyday occurrence, although to be honest, things were moving fast for us. Undeniably, much too fast. Only six months before, we led a simple, routine life in a modest, one-bedroom rented flat in the small town of Dehra Dun in India. We did not own a phone. In fact, the only phone Abhishek might have personally handled was his red-blue-green toy piece and occasionally the black “real” one set up high on the shelf in his grandparents’ home.
And now, here we were in the US with our very own phone and my seven-year-old was handling it.
Things changed dramatically when Raj, my husband, secured a two-year post-doctoral research fellowship at the UTMB in Galveston. The handmade poster adorning the walls of our tiny Dehra Dun home for shared aspirations on the American dream had worked its magic. Raj aspired to work in the US. Finally, the opportunity arrived. He applied for and was granted a two-year sabbatical leave. In due time, his passport was readied, the visa came through and Raj left for the US. The children and I joined him a few months later.
My own research memories from graduate school days in New Delhi were not always the pleasantest. Reminiscences were bitter. The countless times I wanted to quit, the relief when it was all over, and the strong conviction that I would never again enter a lab were, as expected, still not dimmed.
What changed my thoughts? Well, I began to get nostalgic whenever Raj described his experiences at the UTMB laboratories. Slowly but surely. All very exhilarating, but I had been away for six long years; I was a homemaker. Science, meanwhile, had advanced in leaps and bounds. I, on the other hand, had woefully neglected to keep up with any kind of scientific reading. How would I ever get back to the field? Would I even be interviewed?
Undeterred, every few days, I called up some of those meticulously copied telephone numbers to different laboratories.
Late September, one mid-week afternoon, Abhishek was home again.
I dialed a number and repeated my familiar phrase.
“I am so sorry, but I really could not get that last part yet again. Can you please pass the message to my son?” I handed the phone to Abhishek. Through hand gestures, I nudged him to listen carefully.
Abhishek agreed. There was a “yes,” an “okay,” and then “goodbye.” Finally, he put down the receiver.
“Ma, you have an interview.”
Soon enough, I was hired as a postdoctoral fellow by an amazing, hands-on scientist, an assistant professor at the UTMB; a joyful reinstating of a brief scientific career in the States. A few years later, we published, and I was second author in a prestigious scientific journal.
I, a mother with bilateral moderate to profound sensorineural hearing loss, did not always wear my hearing aids. Consequently, I was dependent on my little boy in ways more than I could count. And often, I did not even realize that.
Parenting is a challenge. Who said parenting was easy? I was never given a parenting manual when my first born arrived. I was given books to read or suggestions and advice by my doctor and my parents, but never an actual manual. I was never given a magic wand to help me. I was a single mother for a long time as well, so I had to learn how to do things on my own, too. Double duty was never an easy task, but I managed as best as I could. I made many mistakes as I learned, but I did it the best way I could.
Mental health is a challenge for me, too. Being diagnosed with any mental health condition is a challenge just in itself. Bipolar, PTSD (Post-Traumatic Stress Disorder), anxiety, schizophrenia, Borderline Personality Disorder, and so many more there’s not room to list. Many of these can cause some individuals to not want to leave their homes, to not want to socialize. But as a parent, I also know what kind of life it is to keep a child locked up indoors all day. I want to protect my child from the world and the troubles out there, but I also want them to explore the good things too.
Putting parenting and mental health together really is a big challenge! I am a parent with Bipolar II and PTSD but have not let those two major mental health diagnoses deter me from being the best mother I could be. Have I made mistakes as a mother? You bet I have. Many, as a matter of fact.
In 2018, a couple years after losing my mother and almost two months after my car accident, I was in one of the worst states of mind I’ve ever been in my life. I reached an all time low and made a decision that would ultimately change my life forever. I overdosed on medication and put myself in the hospital for three days. I was monitored like a child before I was released to go home to my family.
I just wanted a break from everything—from all the physical pain I had, all the emotional pain I was dealing with, all the mental pain I was going through at the time. I just wanted it all to stop. The worst pain and confusing time of my whole life and I wanted it just to stop for a moment. I didn’t really want my life to end…just for things to stop. I was in counseling and knew tools and had some tools, but chose to ignore them.
I think that when mothers or other parents get to that point, we don’t necessarily think straight. It also doesn’t help when you don’t have a supportive partner. I have since gone through extensive counseling and continue to go through my counseling sessions. I have also lost another parent and have learned to deal with that loss healthily. And I have gotten a divorce and am now having to learn to parent differently again on my own and be a much stronger, more independent mother and learn to thrive on my own while I raise my youngest child. And I’m doing all this while I’m figuring out how to face the obstacles that are placed in front of me.
I’ve never given up and I think many parents like me have a hard time not giving up. It’s an internal strength and perseverance that I’ve gained over the years and I feel that some of us parents have it. I also feel that some parents may not have it, unfortunately, and may need some assistance from others like from counselors or family members or friends. They may need more encouragement.
Sadly, there isn’t always adequate help and support in some cities, towns, and states to help parents like me. Before I was diagnosed at 25 years old, I was frowned upon and at times I still am because of my diagnosis. However, I try not to let it get to me as much anymore as I have raised two children so far and am still raising my third child. I love them and would do just about anything for them to make sure they were taken care of and happy. I’m a prime example of never giving up—of always trying to move forward and up.
As a disabled person, I knew I’d be guaranteed a tough pregnancy. My most prominent disability, celiac disease, means that even in just my regular life I experience malnutrition and poor nutrient absorption, weakened immune system, GI distress and pain, chronic muscle and joint pain, frequent painful skin rashes, and anemia–which also makes me constantly wildly tired. My celiac disease has caused or exacerbated other health issues such as chronically dislocating ribs, asthma, insomnia, an anxiety disorder, and rheumatoid arthritis.
I knew in a pregnancy I’d most likely have lots of nausea and some vomiting for the first trimester, feel even more tired than usual, need to take iron supplements to stave off pregnancy-induced anemia, and my muscle aches and pains would worsen. Okay, I was prepped for that.
But I had no idea how much more awful it would be.
When I did start throwing up almost as soon as I discovered I was pregnant, I was actually relieved at first. Nausea and vomiting can be a sign of a healthy pregnancy, and because of my celiac’s I was eternally worried of miscarriage: “glutened” (accidentally ingesting gluten) doubles or triples the miscarriage risk in people with celiac. So I viewed nausea and the occasional puking episode in the bathroom as an indication that I shouldn’t worry about my baby: they were doing well so far.
But rather than the “small handful of vomiting” episodes that my pregnancy books promised me, I became debilitated by them. This was my first indicator that something was really, really wrong: after all, I have celiac. GI pain that would be debilitating for someone else is just a day in the life for me: I’ve learned to work with it because I must. My OB-GYN just thought I had bad morning sickness, but this was beyond any morning sickness I’d heard of.
It wasn’t just the vomiting: my nausea was so bad that less than five weeks pregnant, I was living on crackers and fruit popsicles and would vomit at the smell of anything cooking. I was barely sleeping, wildly exhausted, and fighting off headaches; I missed several days of work because I couldn’t stop vomiting and was so malnourished that I became increasingly confused, dizzy, and weak. In order to make it through even a limited work day, I had to be on bedrest the entire time I was at home.
Ironically, I was constantly starving. If I got too hungry, I’d throw up; but if I ate the wrong thing, I’d also throw up; but if I ate too much of the right thing—but if I ate too little—or if I ate too slow or too fast—or—or—or—
You get the idea: everything, even the smell of non-food items like soap, could provoke vomiting. And my OB-GYN still thought this wasn’t concerning. Naively, I second-guessed myself and thought maybe I was just being weak, that this was normal.
When my wife and I found out I was carrying twins, we thought perhaps that was the reason I was feeling so sick (women with multiples are often sicker than women with singletons), but my symptoms continued worsening.
On Christmas Day, when I started throwing up, I couldn’t stop. By this point, I’d lost over 7% of my pre-pregnancy weight but couldn’t keep down even water or ice chips, much less food. During the night I began vomiting up blood.
At the ER the next day, I stared at the diagnosis on my discharge papers: hyperemesis gravidarum.
Hyperemesis is a disability I’d read about in my pregnancy books, with vague descriptions like “the morning sickness from hell” and “if you think you have this, get thee to a doctor ASAP.” But my life—already affected by pregnancy—was completely upended by this disability, which affects approximately 0.3-2% of pregnancies.
To call hyperemesis “the morning sickness from hell” is like calling a tsunami a rainstorm. Fortunately, treatments such as IVs and prescription-strength anti-nausea meds helped significantly. Unfortunately, these treatments caused their own problems too.
Hyperemesis is actually a disability thought to have led to Charlotte Brontë’s death, as she was afflicted with serious vomiting and nausea. Scholar Hannah Copley notes that Charlotte Brontë was afflicted by “perpetual nausea and ever recurring faintness,” so sick that even seeing food would cause nausea. Brontë’s maid is purported to have said, “a wren would have starved on what she ate during those last sick weeks.” Without IVs, anti-nausea drugs, and other medical interventions, HG was likely a contributing or main factor to Charlotte Brontë’s death.
I can absolutely believe that if I had contracted HG without modern medicine, it would have led to severe complications for me as well, and possibly the death of my babies. After recovering in the hospital and returning home, the medications allowed me to keep down enough water and food to avoid hospitalization; but it by no means could make me well. Don’t get me wrong, it was night-and-day different: medication allowed me to rehydrate and to eat some things. But medication could only do so much.
How was my disabled pregnancy with hyperemesis different from a healthy person’s pregnancy?
In a healthy pregnancy, up to 20% of women don’t experience any nausea, and over 50% of women don’t vomit once. The average pregnant woman experiences some nausea between weeks 6–14 and, if she vomits, will only do so for approximately 6 days.
In a healthy pregnancy, a woman can eventually make herself food, and healthy nutrition is stressed emphatically, the implication being that if you don’t eat right and take your vitamins, your baby will suffer or have birth defects.
In a healthy pregnancy, a woman doesn’t need to be hospitalized.
Now, gazing into the eyes of my twin boys, I have absolutely no regrets over conceiving them. But hyperemesis gravidarum is wildly awful, even when treated—and it’s life-threatening if not.
Chelsea would like you to know:
If you or a friend you know thinks their morning sickness is worse than normal, you don’t have to suffer alone. Check out the Hyperemesis Gravidarum Foundation’s criteria for HG, and advocate for yourself at your doctor’s before it worsens.
Walking through a little town or in an airport, no one would likely know I had a disability. I debated on whether to even share this story, because I don’t obviously seem disabled, and many wouldn’t guess that I am. But I have psoriatic arthritis and when it flares, my joints ache so much I can barely move. I also suffer from chronic migraines and asthma, which pile on top of the joint pain.
These conditions, though chronic, aren’t always acknowledged as disabilities by the public, possibly because they don’t outwardly look like a disability. But psoriatic arthritis falls under the classification of immune system impairments of the Disability Evaluation Under Social Security, so maybe that perception will change.
When I hurt, most of my pain is in both hips, my right knee, my left ankle, and my right hand. It hits both sides of my body from top to bottom. And when I get really worn out, my back even starts aching. I must always be careful and thoughtful of how much strain I put on these joints.
Luckily, I have the best, and most patient, family in the world. My husband and I are in our early 50s with twin 19-year-old daughters. My family will drop me at the door when we go out. They know it’s sometimes hard for me to make it to and from the car. They help carry my bags to take the pressure off my joints, and they wait for me to catch up when I fall behind.
As understanding as my family is, I feel bad for holding them up. They’re three non-disabled people who want to live life without having to stop every ten minutes to check on mom. Another challenge — I need recovery time. When we travel, or even have an eventful day, I usually need a day or two to recover.
In early fall, my daughters headed off to their sophomore years at different colleges. And, of course, mom and dad helped them move in. Our move-ins looked different from most of the other “normal” families moving in their kids.
I admit that I always envy the strong moms, lugging boxes and furniture pieces up a flight of stairs to get their kid moved in or doing other things, while I station myself in the room with the job of unpacking and organizing.
Recently, we visited my daughter for Family Weekend at her small, private school. There was beautiful weather and the entire quad was filled with dozens of tailgate tents and students with their families, all standing around chatting and getting to know one another. Seating was limited and not sufficient for those of us who find it difficult to stand for long periods. I was able to find a bench, but it was not close to where the rest of my family was enjoying their time with other families. I tried not to feel excluded, but it was difficult. My daughters and husband had to walk a fairly long distance to pick up the car, while I sat alone on a bench waiting for them. Again.
It is embarrassing and exhausting to have to keep declining or making the decision to remove myself from situations. And I miss out on all kinds of fun activities, including family trips. When my family wants to walk on the beach, or go on an easy (to them) hike in the mountains, I must decline. When my family, all of us huge baseball fans, wants to go to a game, I must decline. I sit and watch the game at home alone, texting my family when exciting plays are made.
The thing I recently realized is that by missing those activities, and the walks and car rides that get my family there, I’m also missing out on family conversation and bonding time. I miss stories that my daughters tell their dad. I miss funny jokes. When I’m sitting on the bench and see them walking away laughing, it hurts me inside. But I don’t want them to stop living their happy lives because of my health issues.
I keep trying for what seems like normalcy. I just want to be considered “normal,” for my family and for my friends, meaning that I want to participate in life, not sit on the sidelines watching it happen. It’s hard not to let depression slip in, under these circumstances too, adding to my “issues.”
Thankfully, one daughter is at a brand-new apartment at her college in the heart of a big city. Her apartment building is designed well for people with disabilities, with elevators and ramps (though the parking situation could be more accommodating). The apartment management hired moving companies to bring all boxes and other items upstairs for us. We just met the movers and told them where to unload in the apartment; we didn’t carry anything up ourselves.
My other daughter, however, goes to a small, pretty college built on rolling hills, beautiful but not great for people with disabilities. And the buildings are older, without elevators, though some ramps into buildings have been installed. Once inside, students climbing up or down behind me on the narrow stairs become impatient.
I try to remind myself, those strong moms helping their kids move in and my strong, healthy friends? I guarantee many of them have their own “issues” they’re fighting through, just as I am, even though they may not appear to need the same accommodations as I do.
The adage is popular because it’s true: Don’t judge a book by its cover. You never really know what people are going through. And just because someone doesn’t look like they are disabled, it doesn’t mean they’re not fighting a health battle with every fiber of their being.
Mothering as both an immigrant and a disabled woman has unique challenges but brings opportunities for new insight as well as great empathy.
My partner and I knew that being immigrants could limit childcare support and other options. While researching childcare, I learned that my partner and I are not eligible to host an au-pair (a cultural exchange program that helps U.S. families with childcare) because we are not permanent residents or citizens. Needless to say, childcare support from our extended families is not easily accessible. As immigrants, my husband’s and my family all reside overseas, and our parents are the only family members who have a U.S. visa, which is required documentation to enter the U.S.
Acquiring a U.S. visa is costly and difficult. I have close friends whose parents’ or siblings’ visa applications were denied multiple times and, still today, their families do not have a visa, let alone have met their families in the U.S.
I gave birth during a time when COVID-19 measures in international travel between China and the U.S. were still strict and it was almost impossible for my parents to travel and support me in person. My partner and I were privileged (though it should be the norm) that we had jobs with paid m/paternity leave and supportive work environments. We shared the childcare responsibilities without any sitters or nannies. Our parents were able to fly in later to stay with us and provided additional support for a time. Yet none could stay with us for a long time because they do have their lives overseas to return to. Geographic distances and language barriers make our aging parents’ U.S. visits not an easy endeavor.
As a small family, my partner and I started to look to buy a property after our son was born. We learned in a hard way that immigration status greatly jeopardizes one’s probability of securing a mortgage loan, and interest rates can be even higher for immigrants. This situation caused significant stress on us in the homebuying process while caring for our infant son. Our loan application was either denied or treated with uncertainties by different mortgage brokers due to our immigration status at that specific time. While my partner wanted to withdraw from buying after encountering these unexpected barriers, I was determined not to have our immigration status limit our financial decision. In the end, our mortgage broker was able to find a lender who accepted our application, and we agreed to a higher interest rate. We were fortunate to have enough savings and income to achieve homeownership. In the process, my partner and I not only had to navigate the unknown territory of homeownership, but also deal with setbacks and uncertainties given our immigration status.
Meanwhile, mothering competes with my self-care needs such as pain management or prosthetics care, for which I have not had an appointment for more than a year.
Like many other new mothers after childbirth, I had to adjust to a new postpartum body with both expected and unexpected changes including bodily pain resulting from De Quervain’s tenosynovitis (also known as mommy wrist). I have been privileged to be able exclusively to breastfeed my son and I refuse any medication that may alleviate pain symptoms but conflicts with breastfeeding.
The challenge of caring for an infant with postpartum bodily pain deterred me from taking on additional prosthetics appointments on top of my existing medical appointments. My prosthetic leg has been mostly functional, with a few episodes during which I could not wear it without feeling pain, as holding a growing child puts a burden on my postpartum body, including my leg. At different points, I used crutches for additional support. Yet breastfeeding does not go well with traditional crutch use, especially when dealing with clogged milk ducts. In the end, my solution is to carry my son less frequently or extensively, so I do not irritate or exacerbate any pain.
Mothering has also, on the one hand, led to reduction of my time and energy invested in my previous disability community work for a time but, on the other, allowed me to reflect on new topics such as parenting with a disability and to better relate with other parents (disabled and non-disabled). As a new mom, I search and gather information or resources that I may need to support my own parenting needs and when possible, extend my knowledge and support to other parents with or without disabilities. I joined multiple moms’ and parents’ groups online, from which I have benefited greatly.
Identifying a support and information gap for disabled parents, I also initiated a niche support group for Chinese disabled mothers including those with immigrant identities. However, this is but a tiny effort in a giant bucket of unmet needs for disabled parents in our societies. As a disability researcher and advocate taking on a new parental role, I am slowly seeing that there’s a lot more to be done to make disabled parents’ life easier.
As I strive to find more balance and ease in having multiple identities and responsibilities (if such a balance is possible), I hope it gets easier for other disabled women and parents in similar situations and that my sharing could bring some new understanding and insight to the world.
Luanjiao Aggie Hu is a postdoctoral fellow at the Lurie Institute for Disability Policy.
Last year, I became a mother when I gave birth to my first child on his due date. Before this, I had many other identities: new immigrant on a U.S. work visa, physically disabled woman using a prosthetic leg, Chinese/Asian person, disability researcher, and advocate. After having my child, being a mother was added to these identities, triggering unexpected interactions in my life experience.
Feeling like a mother was a gradual process for me, an identity that grows on me as my son gets bigger. The feeling of becoming a mother has been enhanced by everyday childcaring tasks: changing diapers; feeding, entertaining, bathing, putting my child to sleep; comforting my child when he is ill or upset, etc. Meanwhile, I observed how my motherhood experience is closely entangled with my immigration, race/ethnicity, and disability statuses, and how becoming a mother reminded me of my multiple identities all at once. This reminder started with the childbirth experience and was intensified as I struggled with childcare tasks.
It was unfortunate that my labor experience at the hospital was disempowering and traumatic, which directly led to a long and challenging postpartum recovery.
I do not believe I received adequate support from the medical team at the hospital. I gave birth on Labor Day, a national holiday. It was possible that the hospital was understaffed at that time and due to the summer peak in childbirths. In the delivery room, the communication between me and the medical staff was frustrating, and I obviously felt that there was some kind of barrier. Significant communication between us was futile and attempts did not lead anywhere. This may be a problem not of the language itself, but of a deeper difference in culture and thinking—or there may be other factors involved.
The medical staff and I could not understand each other’s intentions well. At one point, I asked to wear my prosthetic leg to help with the childbirth, and my request was rejected by the doctor on duty. “It would not make any difference,” the doctor said. I had not met or interacted with this doctor in my previous prenatal appointments. The midwife on duty, whom I had met once in my prenatal appointments, commented to me in the delivery room, “The sooner this ends, the better it is for everyone.”
This comment, among other disempowering details, became the last straw that crushed me. The comment left me with the realization that the medical team wanted me to take the advice to go for a C-section sooner and stop wasting everyone’s time. There was some but not enough progress in the hours-long delivery attempt. I tried to give birth intermittently and also had to spend energy advocating for myself and asking for help; finally, I was exhausted physically and mentally. My fighting spirit was crushed, and I felt utterly vulnerable with an epidural on and my prosthetic leg off. Although my full-term baby showed no signs of distress in the womb, I was advised and eventually had to agree to go into the operating room to have a cesarean section. My baby was neither in an unfit position nor large in size (7 lb 3 oz).
In other words, I spent more than six hours in the delivery room trying to give birth on and off before being sent for a C-section. During the six hours of pushing, there was significant waiting time for the doctor and midwife and difficulties communicating with medical staff as I tried to advocate for myself and ask for help, even as I would eat a bit of jelly and then vomit due to the influence of the epidural. On my child’s due date, my mood changed from excitement and anticipation to anxiety and impatience, and finally to extreme disappointment and despair in the hospital. To this day, writing this experience down brings tears and profound sadness to me.
As a researcher, I am aware of research findings that women with disabilities are more likely to receive poor quality perinatal and childbirth medical care and that their childbirth experiences and outcomes are more likely to be negative compared with non-disabled women. More specifically, research indicates that race and ethnicity are significantly associated with the probability of cesarean delivery. Non-white women have a higher likelihood of cesarean delivery compared with white women.
Such racial/ethnic differences in cesarean delivery rates have persisted over time and engender justified concern about the potential overuse of cesarean delivery in certain race/ethnic groups. Another study points out that perceptions of physicians and healthcare providers in the U.S. toward patients with disabilities are concerning and this could potentially have an adverse impact on the quality of healthcare received by people with disabilities. As an Asian woman with a visible physical disability, my experience in the hospital becomes one of the stories attesting to these findings.
It’s hard to recall what happened in the delivery room, a wound that still feels fresh. I remember many things and recounted the difficult process to my partner in the hospital. It was a draining task during our first days as exhausted parents in the maternity ward. I recorded our conversation, as I was ambitious and wanted to see if there were legal grounds to pursue this matter since I did not believe that the medical team provided me with sufficient support. I eventually dropped the idea because taking on a motherly role has been so challenging and all-consuming. When I shared my experience with my family in China, I learned how my two sisters had similar experiences in their labors yet more positive outcomes due to different guidance and medical support. Both my sisters have had natural births in Chinese hospitals.
In Part 2, Aggie will describe her experience as a new mother with a disability.
Luanjiao Aggie Hu is a postdoctoral fellow at the Lurie Institute for Disability Policy.
Maybe it’s my age (43), where I grew up (Kentucky), or the fact that I was a disabled kid, but I don’t remember playdates being “a thing” as a child. When I had friends over, it was almost always at my house because it was accessible for my wheelchair. By the time this happened though, our parents usually knew each other fairly well.
For my daughters, though, it’s been different. The original idea usually comes out at some random time while brushing teeth, driving, or the ever-popular going to bed. It starts like this, “Mom, my friend Ava wants me to come over and play.” I review that we can’t show up to houses unannounced so I’d need to talk to their grown-up. Eventually, this leads to me writing my name and number on a random slip of paper, and surprisingly often, a stranger texting me to identify themselves as Ava’s mom.
Here’s where it can get tricky.
This person has usually never seen me. They don’t know my husband and I are in wheelchairs. Their child might not either. Even if they have seen me volunteering at school or elsewhere, it’s usually last on their list of priorities with the prospect of playing with their pal.
If they suggest our kids play at their house (and we feel comfortable with that), I typically try to disclose my disability. I do this for a few reasons:
I want to avoid the look of surprise when they see me.
I want the focus to be on our kids when we meet.
I almost always need them to know for purposes of coming and going from their house.
It’s relatively rare when I can access a house (from the driveway through the front door) so I assume I cannot. Given this, I need the parent to know I’ll text them when I arrive for drop off and again for pick up. Here’s an example of what I might say:
“Thank you so much for inviting X over. She’s really excited to come play. I wanted to let you know that I use a wheelchair. Most homes have a step to get inside. Does it work for you if I text you when I arrive so you can meet us in the driveway and walk X inside? I can do the same when I pick her up.”
While they might not have thought about it before, most people realize during this conversation that I won’t be able to get in their door. The solution is a relatively easy one and everyone knows what to expect.
Even if the play is planned at our house, I usually try to open this line of communication in advance. If my kids are invited to an event out in the community by a friend, I also usually need to ask about accessibility. There have been a few times I haven’t felt comfortable with a location because it was dangerous in some way or I wouldn’t be able to get to my child if they needed me. When this happens, we politely decline but explain we’d love to meet up another time.
If it seems like I’ve got it all figured out, I don’t. I want my children to enjoy time with friends. I sometimes dread the anxiety that accompanies these interactions. I wish I could make the awkwardness disappear but the kids, mine and their friends, are worth the discomfort. I want a more accessible and inclusive future. One in which I could show up knowing I could expect access. Until we get there, we can figure out workarounds together.
What does it mean to be an expectant mother with a physical disability? And what does it mean to be an expectant mother who is an immigrant in the United States?
I am deeply aware of my multiple identities. As an expectant mother with a physical disability, I understand my privilege in having a full-time job and supportive spouse, in having acquired skills to do research for information I may need and achieving the social mobility that transformed a once rural village girl in China into a worldly educated woman with a PhD degree. I am a rare statistic in the community of disabled women, as research has consistently shown the multiple disadvantages women with disabilities endure. As an immigrant and disabled woman in US academia, I also find it common to occupy a niche and oftentimes marginalized social position. Being an expectant mother now has further prompted me to reflect on my experience navigating a new chapter in life.
Disability affects my pregnancy to some extent. My disability has evolved over time and so has my understanding of it.
I am currently a below-knee amputee and wear a prosthetic leg. By the time I became pregnant, my disability had long been a normal part of my life and identity. I am proud of how disability has enriched my life experience and perspective. Without my disability, I would not strive for and choose a path of international mobility and be where I am today. Through my international learning and unlearning journey, I have grown to be a firm disability advocate. Soon after I knew of my pregnancy, I proactively sought information from my prosthetist. I disclosed my disability (which can be non-apparent at times) to my healthcare providers and asked questions to better prepare myself. How will the expected weight gain in pregnancy affect my prosthetic leg use? How will using a prosthetic leg affect my childbirth experience, as I usually remove my leg for better blood circulation when not standing or moving for an extended time? And how do I prevent a swollen residual limb in pregnancy so I can wear my leg without causing any pain? These are some of the additional questions to consider to better manage my disability while expecting, besides every other little thing that a nondisabled pregnant woman should be aware of.
Meanwhile, I find that my immigrant identity, in addition to my disability status, has also affected my experience notably. The current global pandemic greatly impeded international travel, especially between China and the US. With draconian COVID policies enforced in China and mind-blowing flight expenses, I have come to the harsh realization that my family in China and I will not visit each other for years, regardless of any significant life events – graduation, wedding, childbirth, etc. Unfortunately, I am not alone in paying this price.
Without physical presence and support from close family members, being an expectant mother in my case means that I must recruit all resources available to navigate pregnancy in an unfamiliar healthcare system while transitioning to a new job and managing a cross-state home relocation. Actively seeking support from different communities and peers has been empowering. For example, I have joined multiple WeChat-based* online immigrant communities of Mandarin-speaking mothers (including expectant mothers) in the US. Some of these communities are location-specific while others include members across the US. One community of over 200 members was just formed based on similar due dates! Communities bring magic and power, as Alice Wong wrote in her edited book Disability Visibility. Women in these communities share diverse birth stories, childcare lessons, and recommendations or pitfalls for purchasing baby stuff, etc. Connected by common motherhood, women in these communities also offer emotional support for peers who encounter difficulties in their mothering experiences. In the age of working from home and lacking in-person interactions while expecting, these communities of support can be comforting and help dispel feelings of isolation.
Being an immigrant comes with vulnerabilities and restrictions. I often find myself exerting extra energy, time, and money to navigate the convoluted US immigration system. One not-so-interesting encounter:
Earlier this year, I received a call from a Baltimore number. Having worked at Johns Hopkins University and visited Johns Hopkins Hospital regularly for prenatal care, I picked up the call, thinking it might be legitimate. It took me some time to realize it was not. The male caller claimed to be an agent from the notorious Immigration and Customs Enforcement (ICE). He demanded I cooperate with his investigation, saying he had evidence that I had violated immigration law by not updating my “alien registration number” in a timely manner (“alien” being a legal term for internationals who live in the US without permanent residency). To prove his identity, he asked me to visit the ICE website and locate the Baltimore office contact information. To my surprise, the caller number matched the contact info on the website. Appalled and confused, I asked the man to send me written notification before I would engage him further. Words of intimidation and bullying followed before I hung up. I immediately tried to contact the international scholars’ office at my institution, while searching online for any similar documented spam schemes. Meanwhile, the man kept calling nonstop, 12 times, before I could block him and make another call for help. I was correct to have hung up. But this incident reminded me of my vulnerability as an immigrant in this country. At one point in the call, my imagination was going in all directions – What if the man was correct, and I have indeed unintentionally violated some obscure immigration policies? Would I be deported while expecting, and what should I do then?!
Being an expectant mother with a physical disability and an immigrant brings new layers of experience and challenge. I hope my sharing a glimpse of my experiences and reflection here can be useful to others who may go through similar journeys. It is new, challenging, and hopefully manageable as well.
* WeChat is a popular multi-purpose social media platform commonly used by Chinese.
Luanjiao Aggie Hu is a postdoctoral fellow at the Lurie Institute for Disability Policy.
I am a parent with a disability. My disability is a severe traumatic brain injury, and it was caused by the event of a head-on car accident. I had to have a craniectomy, which is a surgery where a chunk of skull is removed to help reduce brain swelling, and is later replaced when the swelling dissipates.
This injury has caused me to have a permanent disability in regards to several things, but my memory is one of the main things that was affected. I had one child that was two when the car accident happened, and had two more in the years following. So I am a disabled mom with three kids (18, 12, and 8 years old).
One of the hardest things that my kids (and I) have had to deal with is the fact that I’m not as able to help with schoolwork as I’d like to be. Instead of knowing things at the snap of a finger, I now often have to either read up on it or watch a YouTube video on how to do it correctly.
Another thing that my family (my husband, my children, and I) have had to deal with are child protective services (CPS) phone calls, because of the impact that the disability has on my speech at times. I’ve had the nurse at my children’s school call to speak to me about things regarding my children, and I was completely lost as to what they were trying to say to me. I tried my hardest to grasp what she was trying to tell me, but I know I sounded clueless about the situation. There was also one instance where I’d woken from a nap because they were calling, and I had the “OMG my brain needs to wake up” feeling. I had to call (I didn’t have any transportation at home) three or four different people to pick up one of my children for being sick, and it took a little longer than they’d have liked, so the nurse asserted it was neglect (knowing I didn’t have a license and had to call to find someone to come and get my child). Because of my speech problems and occasional failure to grasp information quickly, along with other nonsensical reasons, the nurse decided it was necessary to call CPS.
That’s one thing my children have had to deal with regarding my disability—fictitious calls to CPS because of my speech and memory problems. I truly feel that this isn’t something to just look past, and I have to wonder if this happens to any other children that have disabled parents also.
There have been times, as I’ve been going through their binders at home, taking out things in the “keep at home” section, and looking through them before tossing them, and then not realizing that somehow some of their homework has been placed in that section, so it gets thrown away. Then when homework time comes, they don’t have it because it’s in the trash. This is why I’m grateful most of their learning is done with Chromebooks now.
They’ve also had to deal with my emotional difficulties stemming from the brain injury, and I don’t wish that on anyone. I think about that, and I get really upset with myself sometimes over it. I’ll sometimes get irrationally upset, depressed, or irritable/angry, and my whole family deals with the challenges that I go through with emotional regulation that I’ve had since the injury.
I feel super guilty about the fact that I struggle at times with emotional regulation, and that my kids are the ones that see that. It’s really hard to try to teach your children how to be competent with emotional regulation and how to deal with emotions when I can’t even always deal with them myself. I truly hope I’m not causing my kids to grow up with a disadvantage regarding emotions. I’m super thankful to my husband in this regard, because when things happen in this aspect, he’s there to explain to them that sometimes things don’t work in my head the way they do in most people’s heads because of “what happened to mom’s head.”
I’d imagine that living with me gets truly difficult at times for everyone in my family. Along with the things I’ve mentioned already, I also now deal with adult ADHD. Even with the medications, it’s hard to not have times where I’ll start doing one thing, and before I know it I’m moving onto other things, and with the memory issues that I have, I’ll completely forget about the first thing that I’d started off doing. At times, I won’t even remember that I was doing something else at first until I see the remnants of the unfinished task. (Or don’t see. For example, we’ll say I forgot to take the meat for dinner out of the freezer because I got distracted by cleaning up something or some other task.)
Overall, my husband is my rock. He’s been there for me for most of my life (20 years) for literally everything that I’ve gone through. I’m lucky enough to have somehow managed to find my soulmate at 15 years old. We were married before I turned 19, and it was most likely the best decision I’ve made in my life.
Let me sum up just a few (super shortened versions) of the absolutely crazy things that we’ve been through together. Together, we went through the loss of my pregnancy with our first son when I was nineteen weeks and five days pregnant. That was its own personal hell. There’s a lot to that situation, but we’ll leave it as I almost lost my life. Then, six months after that, we were in the aforementioned car accident, and I almost lost my life then also. Again. He was by my side through it all, and I love him more than I’d ever thought it was possible to love someone. Together, we have an amazing life, despite my disability and the traumas that we’ve faced. Yeah, life has been hard, and I face some challenges regularly regarding memory and parenting that most people don’t—my life has been more rewarding in so many aspects that I see the average person not having. Yes, I’m a disabled parent, and it makes things a bit harder sometimes. In the end, it’s all worth any effort it takes.