Center for Parents Community Blog

by Luanjiao Aggie Hu

Part 1 of 2

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.

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.

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

by Kara Ayers

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.

Kara Ayers, PhD, is an associate professor at the University of Cincinnati and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD).

by Luanjiao Aggie Hu

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.

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

by Laura Rena

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.

by Ariel Grucza

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.

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!

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

by Alicia Ann Torres

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.

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”

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.