Can You Please Pass the Message to My Son?

by Abha Sharma

Quotation from Abha Sharma: "'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?' .... 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... 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."

“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.

Abha Sharma headshot
Abha Sharma

Never Giving Up

by Tiffany Rose Bailey

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.

Tiffany Rose Bailey headshot
Tiffany Rose Bailey

A twin pregnancy with a diagnosis of Charlotte Brontë’s pregnancy disability—hyperemesis gravidarum

by Chelsea Devona

Quotation from Chelsea Devona: "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...."

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.

Chelsea, while pregnant, sitting on a wood floor, leaning back on one hand; she is sitting near a corner of a room with white curtains and wood paneling and her hair is pulled back into braids; she is wearing a black sleeveless dress, and a portion of her belly is showing
Photo of the author. Credit: Jordan Morrow Photography

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. 

The author, smiling and glancing down at one of her twins, whom she holds in her arms
Photo of the author with one of her twins. Credit: Caedy Convis Photography

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.

Logo for the National Center for Disability & Pregnancy Research

Trying to pass as “normal” can be exhausting

by Alisha McMillen

"Trying to pass as 'normal' can be exhausting" - by Alisha McMillen. Quotation: "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."

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 at the intersection: My experience as an immigrant woman with a physical disability (Part 2)

by Luanjiao Aggie Hu

Part 2 of 2

Quotation from Luanjiao Aggie Hu, "Mothering at the intersection": "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."

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

Luanjiao Aggie Hu is a postdoctoral fellow at the Lurie Institute for Disability Policy.

Access Aggie’s Tedx Talk, “What Does Freedom Mean to Me?