My Experience as an Immigrant and Expectant Mother with a Physical Disability

by Luanjiao Aggie Hu

Luanjiao Aggie Hu blog post, "My experience as an immigrant and expectant mother with a disability." Quoted text: "I find that my immigrant identity, in addition to my disability status, has affected my experience notably."

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

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?

In the End, It’s All Worth Any Effort It Takes

by Laura Rena

"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." From Laura's blog post, "In the end, it's all worth any effort it takes"

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.

Homebound

by Ariel Grucza

"I’m fully vaccinated and boosted, but the truth is that if I get COVID, I’m much more likely to die than the average able-bodied person. I’d leave three children six and under motherless, and I’m only 34. As the world moves on, I feel like my community views my family as disposable...." From Ariel's blog post, "Homebound"

My first child was born in 2015, and my partner and I had planned to homeschool long before that. In many ways, that put me at an advantage in March 2020—my life was not in the same type of upheaval as many of my friends whose children went to brick-and-mortar schools. I never scrambled to find a childcare provider and my kids never needed to make a considerable schedule adjustment—our lives were already centered around learning at home. While many families in our social circle felt the weight of isolation from working from home and virtual school, our lives hadn’t changed much.

Sure, we weren’t going on the field trips and day trips that were common in our pre-pandemic lives, but we didn’t feel isolated. While the rest of the world seemed to be in crisis, our days continued more or less normally. We chose to take significant precautions, and when most of our small-town community decided not to observe our state’s mask mandates, we packed up and moved to a more compliant area. We bought a house with a big yard, a trampoline, a swing set, and our kids had plenty of access to socially isolated outside play.

Fast forward two years to March 2022 and the rest of our state seems to be operating as if the pandemic is over. For our family—two disabled parents, one immune-compromised, and two children too young to be vaccinated who were born at 28 weeks—isolation has set in hard. While we were prepared to school at home forever, we weren’t prepared to stay at home forever.

With so many people no longer masking in public—let alone wearing high-quality respirators like N95s or KN94s—a Costco trip seems potentially perilous. A field trip to a museum is out of the question.

I’m fully vaccinated and boosted, but the truth is that if I get COVID, I’m much more likely to die than the average able-bodied person. I’d leave three children six and under motherless, and I’m only 34. As the world moves on, I feel like my community views my family as disposable.

Pre-pandemic, I had always assumed that most people had a great deal of caring and compassion for their neighbors, but I no longer feel that I can justify that belief. As able-bodied people return to their everyday lives without observing any pandemic precautions, I think that there’s a clear subtext: the social lives of able-bodied people are worth more than the actual lives of the disabled, chronically ill, immune-compromised, elderly, and those too young to be vaccinated.

As a disabled adult, I’m also keenly aware of long COVID, a complication that many people seem to be barely aware of. Many formerly able-bodied people are now newly disabled adults after contracting COVID, and we still don’t know the long-term impacts of mild or asymptomatic COVID infections. The effect of a significant increase in chronic illness and disability will be startling. So far I see few in our society prepared to discuss how we’re going to handle millions of COVID “long haulers” in the years to come. If my children’s generation sees significant long-term impacts from COVID, will we face an entire generation with severe chronic illness?

I know some of these concerns seem extreme to my able-bodied friends. I think it’s hard for able-bodied people to imagine themselves as permanently disabled, but it’s easy for disabled people to imagine themselves as more disabled. Very few able-bodied people seem to be able to conceptualize a version of themselves that has to choose between taking a shower and making food due to pain or exhaustion. Still, almost every disabled or chronically ill person I speak to can imagine themselves with long COVID—less functional, more medically fragile, with an even more uncertain future.

Our lives have started to seem like they’re at an impasse with the rest of society. While most people are no longer masking indoors, we’re still wearing masks outdoors in any scenario where we might encounter another person. My partner turned down several lucrative employment offers in his field because our family couldn’t justify the safety risk of being exposed to countless unmasked strangers. With few taking even minor precautions to protect the vulnerable, I have no idea when we might be able to participate in life again. When my children ask when we can go on a plane trip, I have no idea what to tell them.

My children treat a trip to Target or Costco like a trip to Disney World. They beg to go on errands, and it breaks my heart. They jump up and down with joy in the parking lot if I relent and sob in despair if I tell them case numbers are just too high right now, or it’s too busy at this time of day, and too few people are masking. My partner and I tried for seven years to get pregnant with my first child—we had lots of time fantasizing about how their childhood would look. This is not the childhood I envisioned for them.

I look forward to the warmer weather of spring and summer, where at least we can wear our masks and go on hikes, find creeks to stomp in, and do nature study in the relatively safe open ventilation of the outdoors. We have a few friends—almost exclusively from families with a disabled parent or child—who take similar precautions, and the nice weather will bring opportunities for masked outdoor playdates. Still, I can’t help resent an ableist society when my children look back at old photos of our pre-COVID life. “When can we go to the planetarium again?” my middle child asks me daily. Maybe next month, I said at first. Then perhaps next summer. Then perhaps next year.

Just Ask, by Lynne McCormick

I’m not uncomfortable with who I am because I’ve always been this way. It may be frustrating at times, but it’s the way it is. I cannot change it, so I have learned to be comfortable with it. It can be annoying, it can be frustrating, but this is the way it is. It won’t change. And it’s me. If you have questions, just ask! —Lynne McCormick, “Just Ask"

I am a person with multiple disabilities. I’m also a mom, a wife, and a preschool teacher. 

First and foremost, I was born with hydrocephalus. The right hemisphere to my brain is filled with fluid. There is no gray matter. This condition leads to cerebral palsy. I have limited use of my right hand. I have almost no use of my left. My final disability is the worst. I have epilepsy. The last one gives me no independence. 

I cannot drive. Therefore, when I look into a job position, I have to determine where it is. That depends on whether I can get there by taxi, ride share, a bus, or the old reliable feet. When the snow hits the pavement, my husband, son, or any vehicle in my path becomes my crutch. Climbing stairs is a nightmare. When I went to college, I specifically asked for the disabled dormitory. I have lived with these disabilities for 53 years. I do not mind if you ask what they are.

That is why I became a preschool teacher. I love the inquisitive little 3- to 5-year-olds. I wish I could put them all in the circle and have them ask whatever they wish of me. I would prefer that their parents don’t say, “Don’t ask any questions!” I want the adults to ask questions, too. I feel that they are afraid because someone in their own childhood told them not to. I am here to say, “Just ask.” 

After being married for 27 years, my husband is used to it. My son is 22 years old. He is used to having a disabled mom. I do feel guilty about the fact that when he was sick at school, I couldn’t pick him up to drive him home. That’s why I pushed him so hard to get his own license. And with a little bit of selfishness, I was kind of hoping that he would become my chauffeur. 

The hardest part with having cerebral palsy is the assumption that I cannot do my job. While I understand people asking if I can lift children, I kind of laugh under my breath when they ask me if I can change diapers. If you’ve ever been into a nursery school, you will wonder if the able-bodied current employees are able to change diapers! I can change diapers. I just do it on the floor. I can lift and carry children. I carried my son around like he was a sack of potatoes. I couldn’t wait till he could get up and walk!

My epilepsy led to a different issue with my son. While I was taking medication, the neonatologists believed that it would make the growing baby disabled. It took early-intervention nurses about 3 months to realize that my son was perfectly healthy! He did stay in EI until he was 3 years old. I was told that he was the model for the other children! I believe this also led to my son having much more compassion and understanding towards people with disabilities. I can’t tell you how proud I am of the man he has become! He may be part of me, but I believe it’s mostly his own strong heart that made him this way. 

Yes, I am someone who is in my 50s with a disability. I want you to ask questions and I will answer as best as I can. I’m not uncomfortable with who I am because I’ve always been this way. It may be frustrating at times, but it’s the way it is. I cannot change it, so I have learned to be comfortable with it. It can be annoying, it can be frustrating, but this is the way it is. It won’t change. And it’s me. If you have questions, just ask!

A photo of Lynne McCormick

Lynne McCormick is a mother and preschool teacher in her fifties with multiple disabilities. You can connect with her on LinkedIn.

My Pain Made Me Multidimensional

A photo of a blonde woman standing in a field with her son. The woman has her back to the camera and is wearing a green dress.

by Valerie Ivy

My husband resents me.

He, (Charles), won’t admit it because only a “bad” person would resent their partner for being disabled. Charles is pretty good at knowing what CC, “Cutout Charles,” should feel. So while CC “definitively does not resent me,” he does think me a hypochondriac, as does Charles. I fear my son is heading there too.

Okay, I did use Dr. Google – just a smidge – because I’m still “infected,” despite finishing my antibiotic ration. But don’t worry; I realized I will die of cancer within 48 hours roughly six years ago. This is when exhaustion, pain, depression, brain fog, skin tenderness, anxiety, diarrhea and vomiting, (yes, usually at the same damn time) debilitating nerve pain and general all-over body annoyances, became my pain, no longer orphaned.

Because it is mine. It is not something I can share with Charles, or CC or my son, Royal, no more than they can share theirs with me. It’s one of the few constants in my life and I fear I may actually love it. Wow. Am I in love with my pain?

I breastfed my son for 14 months until he and I both were done. Weaning was easy, potty training was easy—my son is a very “easy” child in most respects. So many people made sure I knew this, usually through comparisons to their pants-poopers and nipple-demons. But Royal can be quite needy of his mother specifically. And I am his mother, but I am also a person who needs to sit in her own thoughts. I try my best to be present. No, that isn’t even true. I should be more present.

My pain restricts many of my desires and needs. When I do have the patience or focus, the selfish researcher in me wants to hide in the garage and fall down various rabbit holes, the latest being New Jersey and Pennsylvania’s abundance of teak midcentury-modern furniture. (You know teak cannot be currently harvested, right? I do. I know quite a bit about teak wood now actually.) There is so much information out there, but not enough for me to have my very own diagnosis.

For example: are my depression and anxiety secondary to my physical conditions, or are they the cause? Or is it really some sick circle-jerk where nearly everyone, except fatigue over there, is just trying to finish? I did notice, fights with Charles, (and with CC to an extent), mean stomach problems for several days. But also, there are times there is no noticeable trigger and I am just sick.

I know Charles dreads answering my 10 a.m. phone calls. I know because he waits until the. Very. Last. Ring. These are the ones where I’ve tried muscling through the morning with Royal, but call, needing my husband to leave work and “come home right now ” And once COVID-19 shut down Royal’s school, I was on the line at 10 a.m. a lot. I know CC makes Charles answer.

Just between you and me, even without my disabilities, I would make a terrible stay-at-home mom. My son needs chatter and noise. He needs outdoor activities and exercise and laughter and kids, other kids. I need too wander around inside my own head and enough connected minutes for the hike. So, I found him the absolute best school for his personality and interests. It’s a forest school, where an arboretum is his classroom and mud his medium. I shudder imagining our life without them and the scholarship (see?: research), as Royal is thriving with them.

At first, I got away with just saying “nature-based learning,” when family and friends raised eyebrows at me, a woman with little means and no job, pawning her child off during the week. Now, I offer no explanation. This is simultaneously liberating and like sounding an internal war drum. My own cut-out, VC, I suppose, would over-explain but therapy is teaching me better. Another bonus of Royal’s school is when he comes home, I am usually ready and waiting to receive him. I am here, present.

"My husband resents me. He won’t admit it because only a 'bad' person would resent their partner for being disabled.... I fear my son is heading there too.... [M]y pain, no longer orphaned.... Because it is mine. It is not something I can share...." Quote from Valerie, "My Pain Made Me Multidimensional"

If I get my very own diagnosis, I also get my very own prognosis. Charles needs this more than I do: he is a fixer but he cannot fix me. I learned to keep my expectations low when it comes to doctor visits, labs and imaging. I wouldn’t go so far as to say I have “actualized” (what does that even mean, really?), but I have adopted my pain, absorbed and accepted it as part of me. Maybe that is what I meant by in love; I no longer fight it? Maybe it is more like Stockholm syndrome. Seriously though, I own my ailments so well, when I experience a new symptom, it is hard to stop myself from overexplaining the sensation to Charles. CC nods. Charles rolls his eyes.

Until my diagnosis falls from the sky, or manifests itself in list form or some other tangible way, Charles may continue doubting me, resenting me. I’ve grown fond of CC though and will miss him if he goes.

Life Is Not a Bowl of Cherries—It’s Empty

by Alicia Ann Torres

An image showing a quotation from Alicia Torres. It says, "So, how do a high-risk, almost deafblind mother and her potentially COVID-19-infected young daughter maintain social distance in a small one-bathroom bungalow? Prayer, high-powered hearing aids, clear communication, and respect,” and has a picture of Alicia Torres next to the quotation.

At the beginning of the COVID-19 pandemic, I received a phone call from my panicked brother. He said, “Get someone to help you go to the store and get food now. California is going to go on lockdown.” Bewildered and naive about the severity of the situation, I reminded my little brother that I shopped online.

Once California initiated the shelter-in-place order, it was virtually impossible to get a grocery delivery online. My screen was flooded with messages about unavailable delivery dates. I tried four different companies, but none of them came through. Empty shelves and panic-buying crowds push people with physical limitations further into isolation. Although Nextdoor.com, a free social-media site, allows neighbors to offer shopping services or run errands for high-risk people, I don’t feel comfortable using it. Living alone is something I don’t publicize for safety reasons. Moreover, my relationships with my neighbors are temporary, and I don’t feel right exchanging money with them right now.

Fortunately, I’m enrolled with Meals on Wheels, a volunteer organization that delivers prepared meals to the homes of disadvantaged seniors. I’ve struggled with cooking because Usher syndrome and retinitis pigmentosa have caused most of my vision to deteriorate. Unfortunately, Meals on Wheels is also experiencing a lack of volunteers because they fear COVID-19. Many are high-risk senior volunteers, too. More people are applying for this service, further straining our already vulnerable community.

I called my daughter, Ana, at her work internship program in San Francisco and left a voice message. I wasn’t feeling too well myself; after a visit with Grandma at the nursing home on March 7, I’d developed malaise and a persistently sore throat.

After hearing the dramatic news, I thought, “Perhaps I’d better self-isolate.” My doctor’s office happened to call and they agreed with this idea.

Ana finally returned my call and revealed that she, too, had been exposed to COVID-19. The temporary housing facility she shared with others had ordered all the residents to leave within a week. The safety spokesperson from the CDC said that this order was for “liability reasons.” The site was near a homeless encampment. My fears worsened by the moment, developing into outright panic. Ana’s fears had become my own.

“People are dying everywhere,” she said. Ana also mentioned she saw someone attempting to jump off the bridge. My heart sank. My prayer warriors and I prayed that Ana and others feeling similarly wouldn’t take their lives.

The fear of the unknown became the beast within.

I told Ana she could stay with me. She said it would be difficult to come back home after living independently for a few years. I also knew that living with someone who is almost deaf, like me, can be challenging. You have to face me directly so I can read your lips. Soft voices or whispering won’t work, either. You can’t talk to me from another room; you have to get out of your comfort place and come to me, or vice versa. My siblings can tell you more about that!

Yes, I talk loudly because I can’t hear my own voice. Yes, I run into walls and bang into doors because I’m blind. This can be worrisome for some, but not for me.

Life is not always a bowl of cherries.

So, how do a high-risk, almost deafblind mother and her potentially COVID-19-infected young daughter maintain social distance in a small one-bathroom bungalow? Prayer, high-powered hearing aids, clear communication, and respect.

Housekeeping issues, such as cleaning, picking up, and organization, are a problem for both of us. Walkways, counters, and tables need to be free of clutter. Ana has accumulated more furniture, plants, bicycles, art supplies, and other things. Ana suggested that I donate my furniture and “nonessentials,” but I told her, “No way, José!”

Ana always has cheered me on: “You can do it, Mom!” Now it’s my turn to cheer her on. My vision has deteriorated significantly, so Ana has had to help me around the house. It’s a difficult position for me to be in; as a single mother, former nurse, and eldest child, I’d always been a caretaker. My mother was also a single mother raising six children, so caretaking is in my blood. Ana hasn’t seen how I have to use touch more to navigate my surroundings. Because she is sighted, she will have to make the the effort to distance.

Face masks hinder my ability to read lips and discern what people are saying when I go out in public. Public transportation such as BART, buses, or Amtrak will be a challenge with the mask; I’m not sure how this will work. I cannot rely on Ana to be my chauffeur: will I be in Hermitsville?

Where is that bowl of cherries?

We have an old garage that was converted to an accessory unit that miraculously became vacant for a few weeks. This unit gave Ana plenty of space and time to quarantine, organize, and heal from all the commotion.

I learned basic sign language as a child, and have done some tactile sign language with the deaf community. I am currently learning Braille via Bluetooth hearing aids and iPhone. My goal is to master Braille, in case I become deaf.

Ana has decided to settle at home with me for now. Yes, I am reminded to lower my loud voice on the phone, especially at night, to avoid disturbance of the peace. No, I can’t eat food with my fingers; I know this looks primitive to our sighted friends with table manners. Yes, I remind her to keep things out of my way, to which she responds, “I know, I know, Mom.” We keep our distance, not just to avoid spreading COVID or colliding into each other, but to maintain our sanity.

All the same, though, we need each other. On Mother’s Day, we took a walk, Ana serving as my sighted guide. As I gently held Ana’s elbow, this brought back memories of holding her tiny hand as a child.

Life can be a bowl of cherries.

I Like Being a Mom with a Disability

In this video, Jessica Salmond, a mother with an intellectual disability, describes the ways she supports her children as a parent and activist.

From the video: “And I like being a mom with a disability because I’m able to help my children with their disabilities. So, I’m able to be at their IEP meetings and understand what the IEP is about, be able to suggest different programs or different organizations. I’m also able to speak out on behalf of their disabilities and tell people what their limits are, what they can do. I also sit on disability boards to speak out on mental health and people with disabilities and children with disabilities.”

Continue reading “I Like Being a Mom with a Disability”

I’m a Capable Mother, It Hurts to Have to Prove It

A close up shot of a woman smiling brightly at the camera. She has brown skin and short straight black hair. She is wearing silver hoops and burgundy glasses. She seems happy in the photo.

by Sequoia

I was diagnosed with cerebral palsy at age two. It affects my legs, and I walk on a walker. I’m  a strong-willed person who always strives to be independent to the best of my abilities, so I complete most of my daily routine on my own. When I put my mind to something, it is hard to convince me I can’t achieve it.

Now, I am the mother of two boys, ages four and two. They mean the world to me, and I’m grateful to have them. The moment I found out about my pregnancies, I committed to learning everything needed to care for them. Google was my best friend and still is as they are getting older.

However, just knowing how to care for them without proof was not enough in the world’s eyes. A barrier I faced as a disabled parent is not having a custody agreement in place for my kids. This is something all parents should have, but it’s even more important for disabled parents to have because we are already seen at a disadvantage. I’m sharing my experience because no one told me that without a proper agreement in place you are assumed unfit just because you have a disability. People sometimes count us out when it comes to parenting and that is a painful reality to live through.

I was three months pregnant when my ex got angry with me and took custody of our oldest son without my permission. He felt I should only have supervised visits. This shocked me because I had always been our son’s primary caregiver. We had never been apart, not even in the hospital. When I refused supervised visits I was not allowed to see my son, and there was nothing anyone could do about it. I would beg and plead with my ex to give me back my rights as a mom because legally I knew his actions were wrong. Some even agreed with him because of my disability. It was devastating.

The effects of not seeing my son weighed heavily on me. I couldn’t eat, sleep, and I felt helpless. The only thing that kept me going was my unborn child. It was important to me that I did not have the rights to my second child unfairly taken, so I went to court and filed for custody of my son. My second son was added after he was born. The road to seeing my son again and getting legal parenting rights for both of my kids was not easy, but it could have been easier if I knew what what I know now.

I had to take classes, have my home evaluated, and be medically evaluated by my primary physician. I also had to prove I could care for my kids and be left alone with them. The other parent only had to have his home evaluated. While I’m grateful to have proof that I’m a capable mother, it hurts to have to prove it simply because you are disabled.

It was almost a year when I was reunited with my son, and over two years before the case would be resolved in my favor. Imagine having to introduce yourself to your child all over again. No parent should have to do that. On the bright side, I feel that this happened so that I could help other disabled parents 

One of the things I learned is to prepare during pregnancy. Sit down with your partner, married or not, and discuss both of your roles in the child’s life physically and financially. Write down what you agree on and both parents should sign it and have notarized copies. Even if you don’t have to take legal action, keep it as a reference. If you have more children after agreeing, just reevaluate it. Take parenting, CPR, and any other class that prepares you for parenthood. 

Another thing I learned is having a custody agreement in place doesn’t mean there is conflict. It protects your rights as a disabled parent. So many make the mistake of waiting until a conflict arises to take action, but the truth is this something you want to have to keep conflict from occurring. Your partner (if they are not disabled) should never want you to be seen at a disadvantage because of your disability. They also should want you to have fair rights because this is your child too.

The most important thing I learned from my experience is not to be afraid. I didn’t act sooner out of fear. Not fear of the other parent, but my circumstances. I thought I didn’t have enough money; I wouldn’t be taken seriously; and that I had let my son down by not  taking what was offered to me so I could see him. But after pushing those fears to the side, the need to stand up for myself became stronger. I’m so grateful because I get to see my kids every day and know my rights will never be compromised again.  As disabled people, we have been overcoming obstacles our whole lives. Just look at this as one more thing you have to do for your voice to be heard.

Lastly, I want to encourage that if your parenting rights are being compromised go to your family and friends for support. It doesn’t matter what type of support it is as long as it’s helpful. There were times when I needed to vent, yell, and cry. Even if your loved ones have an opinion that differs from yours, listen because you will need a real-world perspective. Use their advice as strength to keep going if you want to give up

Parents with disabilities are still parents. We are capable of teaching, caring, and providing for our kids despite our barriers. We should never have our rights taken or questioned because we are seen as the weaker parent. The person parenting with you shouldn’t see you that way. But unfortunately, this is a barrier that we have to consider when becoming parents. But I am proof that this barrier can be broken.

A Silent Pandemic

Dylan stands in a blazer and jeans crossing his arms and smiling at the camera. There's fall foliage behind him.

by Dylan Ward

While everyone was busy preparing for the pandemic, I lost my hearing.

I’ve been living in silence now for about two months. I am hard-of-hearing and up until recently, I wore a hearing aid in my left ear; there’s negligible residual hearing in my right ear, in which I did not wear a hearing aid. Around mid-March, I sustained an injury to the head and because of the structure of my inner ear anatomy, the injury took away the residual hearing in my left ear.

I’ve been a stay-at-home dad to my seven-year-old son since he was two. It hasn’t always been easy for me as a parent. I don’t have the luxury other parents have with hearing their child in any situation. I’ve always worked harder to communicate with my energetic, stubborn son.

We were building a playhouse and I was careless, letting a board fall. Over the next days and weeks my husband and I visited the urgent care and ear specialists. Everywhere displayed coronavirus warnings and bottles of hand sanitizers reached for our hands. Some staff members wore masks and I was crestfallen. Without my husband, communication would have been impossible. Mask-covered lips are unthinkable for the deaf and hard-of-hearing.

Medicine and healing did not restore my hearing. Small adjustments were made at home since I couldn’t move easily with my vestibular imbalance and frequent rest was required. None of us knew enough sign language to communicate but we were patient with lip reading, sometimes reminding my son to slow down.

I began to wonder what it would be like with silence indefinitely, to parent a child I couldn’t hear. There were certainly worse things that could have happened to me. But I wanted to hear my son again. My Otologist encouraged a cochlear implant. Initially, I’d ignored the cochlear implant information sent home with me. They implied something I wasn’t ready for. How could I possibly have surgery in the middle of all of this? It also worried my son too, in ways I had not realized. I wanted to avoid it all, to simply get my hearing back. Over time, though, I accepted the situation and as I researched cochlear implants, I became less resistant.

The day of the surgery was exciting and daunting and strict protocols were in place for the hospital. My husband was not allowed to assist me in pre-op, but this time I was prepared. I’d installed a special captioning app on my phone with pen and paper at the ready. The app failed, of course, with poor reception. Handwriting everything seemed it would be too cumbersome for everyone on a schedule. Thankfully, the nurses and doctors pulled down their masks to speak, allowing me to lip read. The mask I wore probably put them at ease.

Recovery from surgery wasn’t easy. And I’ve never felt more disabled than I have these past few months. I couldn’t imagine going anywhere like I did before. My husband assumed the small tasks and errands I once handled, both to help me and to keep us all safe. He’s also done his best to work in a limited capacity and provide income.

It’s been challenging to parent an active child sequestered at home. The quarantine has forced me to parent in ways I had not anticipated between managing homeschool, daily home life, and taking care of myself in recovery. Homeschooling has been our biggest struggle. Online instructional videos are not captioned; virtual chats with teachers are out of the question. My son, who once loved going to school everyday, tired quickly of distance learning. The computer couldn’t replicate his classmates or teacher. He desperately craved that social interaction he’d lost and it hurt to see him hurting.

Everything that’s happened has put my disability into a different perspective. It made me realize how limited I really am, or have always been, both at home and elsewhere. It had been hard to hear my son before, but now I couldn’t hear him at all. I wouldn’t know if he was crying in another room. I’m tense and worried when he goes outside to play, constantly peeking out the windows just to be sure he’s okay.

My husband misses being able to communicate with me. My son misses normal routines. Sometimes he forgets daddy really can’t hear now and turns away when frustrated. Then I get frustrated and wear myself out with an upset child. Oftentimes I interrupt conversations without realizing it. At times my son has taken advantage of my inability to hear, sneaking around the house and hiding when in trouble or taking an extra treat when not allowed. But he’s seven. Sometimes I let this slip, sometimes I don’t. We’re already stressed from these unusual times, so I give my son a little leeway. I have to let him do something he doesn’t normally get to do. No one is harmed from it and this gives us small moments of happy.

I’m hopeful for the future, that the cochlear implant will enable me to hear in new and improved ways. I’ve adapted to a world that cannot be together like we once did. I stay connected with family and friends via texts and emails. My son has embraced virtual learning more with a few adjustments made and he has fun with it. He’s been writing letters or sending funny pictures to friends and happily gets them in return. He’s also been helping daddy more and taking his time to communicate. We laugh at silly things I didn’t hear correctly and we cry for things we miss.

What is most important is letting him enjoy his childhood in a time like this no matter what is happening to daddy, who loves him always. My son is most comforted when I’m just with him. My presence makes him feel okay. I hold him and keep him calm. We just let ourselves be here, together.

A Frantic Improvisational Game Where the Points Don’t Matter

by David Preyde

A graphic with a quote from David Preyde. It says, “Now, when you’re disabled, you are made to feel that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it ‘the shame of existing.’ I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize." —David Preyde, A Frantic Improvisational Game Where the Points Don’t Matter

All right, doing anything as a disabled person is bullshit. Going to get groceries is bullshit: if you’re autistic, like me, it’s too bright and too loud and too crowded. If you’re in a wheelchair, like my wife, half the food is out of reach. Walking down the street is bullshit- too loud, too crowded (for me), or nobody pays attention to you and bumps into you or blocks you (my wife). Hell, my wife almost got her ass killed trying to get off the subway, because the gap between the platform and the train was too big.

This is just ordinary, everyday shit.

Then you add parenting into the mix, and that’s a whole different thing. People don’t even think disabled people can have sex, let alone parent, and so the whole system of parenthood- everything from doctor’s appointments to daycares- simply isn’t set up for us. Everything we do is a mad scramble, a frantic improvisational game where everything’s made up and the points don’t matter.

Anyway, my wife and I are smart as hell, and resilient, so we made it work. We found a groove. My wife is the face of our relationship- she deals with other people, and does the detail work, and generally makes sure our lives keep running.

And I help keep my wife keep running by helping her out with all the physical stuff that needs doing; the stuff she physically can’t do. It works. Together, we are a full person.

Then a global pandemic struck, and holy shit. As if there wasn’t enough goddamn stress in our lives, we had to deal with a crisis of near apocalyptic proportions.

We had no idea how long it was going to last- a few weeks maybe?- so we farmed our toddler out to my wife’s parents. This enabled my wife to keep working at home without interruptions.

For a few weeks, that was fine. Everything kept functioning smoothly in our cozy bubble. But we missed our kid, and the world outside kept getting worse, and so after two weeks we made the decision to go and live with my in-laws until the pandemic was over.

Of course, this wasn’t easy to do, because my father-in-law had to rent a van and drive five hours across a wasteland of infectious disease in order to pick us up, and then drive another five hours back. Everything is bullshit when you’re disabled.

So that was a month and a half ago. Since then we’ve been sequestered in a very pleasant, very large house in the middle of nowhere. Nothing is within walking distance, and I don’t drive, which makes my wife and I dependent on her parents for everything.

Now, when you’re disabled, you are taught repeatedly that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it “the shame of existing.” I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize.

Not only are we depending on my in-laws for food and shelter, but we’re also depending on them for childcare. My wife continues to work full-time remotely, and my autism makes any change in my routine excruciatingly difficult. It drains me of energy and leaves me feeling unmoored. So right now I’m in survival mode, unable to do much of anything, and struggling with the shame of existence. I spend as much time with my toddler as possible, and do what I can. I feel it isn’t enough. My wife feels I’m doing enough, but that she isn’t doing enough. I feel she’s doing enough. We both feel the constant shame of existence.

My in-laws are pleasant people. They are nice. They are friendly. So it’s easy to ignore what’s happening under the surface. They’re big believers in bootstraps. They think if everyone just pulled themselves up by their bootstraps, everything would be fine. They think every problem would be solved if folks just made a little more effort.

Well, I can’t lace up bootstraps because I have dyspraxia, and my wife can’t wear boots due to chronic edema.

My in-laws’ pathological belief in the Value of Effort drives a wedge between them and my wife and I. We try to communicate with them, but they can’t understand us. And because they help us so much, I feel guilty resenting them. Aren’t they nice? Aren’t they decent? Aren’t they making an effort? If I made an effort, maybe I could be better. There it is again: the shame of existing.

When you’re disabled, everything’s bullshit. But that’s not the natural result of being disabled. It has nothing to do with disability.

It’s because we’re not accommodated. We’re not understood. Non-disabled people don’t make room for us.

If they only made an effort, our lives would be better. The non-disabled really need to pull themselves up by their bootstraps. They need to put their nose to the grindstone. They need to get their acts together.

I mean, I see non-disabled people try- bless their hearts- and their struggle is so inspirational. But if they’d try just a little harder, maybe their problems in coping with us would be solved.

Maybe the gap between them and us would be closed.

But I don’t really think that’ll happen any time soon. And I can’t dwell too much on the future. I have to concentrate on the present. Right now, I’m stuck in the middle of nowhere. I help my wife out as much as I can. She helps me. We help raise our kid the best we can, and try to remember that every parent is struggling right now.

But not every parent is dealing with this particular kind of bullshit. No one should have to.