My Kids Have Learned Compassion and Empathy

Jenna is outside, smiling and looking directly at the camera. Black and white photo.

by Jenna Pashley Smith

Im a mom to two kids aged six and eight. My disability is largely invisible: Ive had rheumatoid arthritis for twenty years and racked up various joint damages. My limitations change by the day: some days I feel relatively able, others I can barely walk. The unpredictability of this disease has been a challenge for my parenting from the very beginning. But as a result, this is also the only mom theyve ever known, a mom who winces  when they reach for my hand, but also one who can sometimes turn crooked cartwheels with them. Other days, Im the mom who limps around the house with a cherry red walker.

Being asked to stay home during the COVID-19 crisis has not been the horror I thought it would be. This disease flares up for me more under certain conditions. The normal suburban lifestyle in our area-overextended and extremely active-kept me on a constant rollercoaster of energy drains and physical strain. The permanent damage in my wrists, fingers, and an elbow mean that even driving is uncomfortable on my best days. And a good day could turn bad in a hurry. My children havent visited the zoo more than a handful of times, even though our city has a fantastic one. The 45 minute drive, plus miles of walking, means that Im completely trashed before weve finished visiting the elephants! So they miss out on things because of me. I try not to feel guilty about that. But when everything is closed, I dont have to feel guilty at all!

At home, I dont have to push to keep up with the myriad activities of school and friendships and activities that used to make up our daily grind. Ive always managed by juggling the days symptoms and adjusting on the fly. When I pushed too hard, Id cancel all plans and spend a few days in bed, recovering. Our friends never really saw me on bad days, so I dont know how many people actually really understand the degree to which this disease impacts my life. The pressure to participate or go out was always high in our social circles. Its a relief to not have any of that now. I dont have to worry about hurting anyones feelings by declining invitations. Instead, we garden. We take our books outside and read in the gorgeous spring weather. The kids have been kicking soccer balls around and practicing their handstands. I offer encouragement from the sidelines and nap when I need to.

My kids are pretty aware of when I need help, especially my daughter. Shell give me a shoulder massage or rub my hands. Ive been the recipient of many naptime facials” complete with abstract makeup and intriguing hairstyles! My son has become a voracious reader, and he likes nothing better than to cuddle up with a fat book. Thats an activity I can always participate in!

At the beginning, I couldnt rest at all. My anxiety was hammering away at any shred of calm I found. I didnt know if I could trust my kids to stay home, so I was on high alert all the time. We live in a close-knit neighborhood surrounded by families with kids all the same age. The children have a 1980s sort of existence, bouncing from house to house as they play all afternoon, sometimes all day on the weekends. Isolation was extra necessary as the neighbor affectionately known as Everybodys Grandma” and I were both high-risk individuals.

My inflammation got really bad during those first weeks. I was having difficulty using my hands and I was fearful of using some of the medication options at my disposal because my husband was (at the time), still having to go into the office every day. Halfway through our quarantine” he was furloughed to half-time. Its not ideal from a financial sense, but at least we still have health insurance, and the week off is a welcome relief for the whole family.

Once we found a rhythm for our weeks, my symptoms got better. I took care of myself in the small ways I could. And letting go of anxiety through breathing exercises, diving into my writing, and limiting social media really helped. In our old” life, we realized between school and activities, we only really spent time together as a family for a few hours every day. The quality time with my family has been amazing. Its allowed my husband and I to get to know our children in a new way.

One thing Ive noticed during quarantine is that my physical limitations have forced my kids to grow up differently than their peers. Other parents Ive talked to are carefully curating what their kids hear and learn about the pandemic (and life in general). Not my kids. I keep it age-appropriate, but we havent ever tried to shield them from the realities of pain and suffering. I dont actually want them to have a rosy, innocent outlook. I want them to recognize that pain is part of life. Not ideal, but real. They need to see that pain isnt to be avoided, but to be faced, whether its a scraped elbow, a knee swollen like a cauliflower, or grief. Pain is a signal, but until its faced, youll have no idea if the signal means stop!” or keep going!”

When we talk about staying home, even my extremely extroverted daughter understands that its to keep people safe. People like mama. And even if theyre sad about missing their friends, the sacrifice is worth it. Theyre not complaining about fairness, because the world isnt fair. Instead, they pray for the germs to die” and for all the people working tirelessly in hospitals and grocery stores. Living with me and my disease, theyve learned a compassion and empathy that gives me hope for the world theyll be part of rebuilding.  They keep going. And so do I.

Life During the New Normal

Sampson is looking down at the camera with a slight smile.

by Sampson Edowe (@Siriacy_Trust)

Life during the new normal” is being quite challenging for me, yet revealing. It has provided an ample opportunity for self-appraisal and introspection. It has also shown that what ordinarily appears unthinkable, undoable and maybe outright unrealistic is very much in the opposite. Such that I can conclude that at some point physical disabilities are not all regrettable hindrances but necessary limitations.

I am Sampson Edowe by name, 35 and a single parent with an amputated leg. Being a single parent of one daughter is most definitely going to be very challenging, most especially in the face of a pandemic. The current reality has brought along with it more discomforts amidst uncertainty. As a man who had being living with an amputated leg, I had already made some necessary adjustment to help me cope with my current situation. The adjustments had been coincidentally favoured by the stay-at-home rule occasioned by the outbreak of the coronavirus pandemic.

I have lived with my disability for almost three years now. The outbreak of the pandemic has indeed caused some changes in terms of my lifestyle, job and daily schedules even in my relationship with my twelve year old daughter who is still in high school. The novel coronavirus was first reported in Nigeria on the 27th February 2020. I could remember vividly I was returning from a private publishing firm in the ever-busy city of Lagos where I have worked for five years when the news of a man being tested positive for the virus was reported in the country. I was greatly troubled because I had read what western countries with even better medical facilities were going through. I imagined the worst as I feared my unpreparedness for the new evil was going to be costly.

The spread of the virus started gathering momentum in March and the first issue that shook my world was when the company driver that was assigned to take me to work was asked to withhold his services. I then had to rely on the goodwill of my neighbours to get to work for the few days the company kept running before everything grounded to a halt. The government had to enforce the city lockdown in order to curb the spread of the virus.

I had just paid my daughters school charges and my mortgage fees so I was barely struggling to stay financially afloat again. Battling with a nagging back pain that I felt was a result of the sedentary nature of my job made me feel everything was happening all too quickly. Having to cope with the adjustments caused by the lockdown policy has always given me nightmares. I tried to understand that walking about to get things I wanted was always going to give me difficulties because all along I had been reliant on friends and neighbours to get going. All that had since changed. Everyone is now trying to find ways to survive the uncertainties of the moment.

School had since closed and my daughter is constantly with me at home reciprocating all the love and care I have been showing her since she was a toddler. Though she is young, her level of maturity and understanding is rare. My married sister who lives a few miles away had been stopping by to help us in cooking meals most especially in the evenings but with the lockdown policy she could no longer stop by. I have now tried to do some cooking by myself with my daughter providing some little help. I had gotten a wheelchair to quicken my movement around the home and I tried to level every surface high enough to hinder my movement. This has help get around some places which hitherto I seldom enter like the store, kitchen and laundry room.

As the lockdown intensifies I tend to rely more on online shopping than I ever did before with the charges being at cut-throat rates.  Before the outbreak of the pandemic my company driver was given the permission to drop off my daughter at school in the morning where she was served breakfast and lunch before driving me to work. At work Id sent a colleague to help me with shopping if I ever needed anything. Sadly, all that is changed now as everybody is concerned about their own affairs.

With the graph of the pandemic rising daily I was among the first set of workers that was advised to work from home and was equally placed on a pay cut. The company had been severely affected by the pandemic and needed a little adjustment to stay operational. The pay cut has had dire consequences on my finances and well being at this period. I have already told my daughter that we are cutting down on the amount we are spending on buying cookies and also the money we spend on TV subscriptions. In addition to the discomfort caused by the pay slash is the problem of poor electricity supply which has hindered my productivity. I cannot work on tasks or ensure the timely completion of tasks that are assigned to me. As a result of this, I am constantly queried for not living up to the expectations by my employers.

My daughter who had been home now for almost two months now constantly battles with mood swings. She complains bitterly that she misses her friends and playmates in school to the extent that she makes it really difficult for me to be focused on tasks. The reality I face as disabled person is compounded by the outbreak of the pandemic. I can only wish that a vaccine for this virus be discovered early enough so that we can at least return to the period where we enjoyed the company and solidarity of others which the social distancing and lockdown rules have robbed us of.

Making Peace with Dependence

Kelsey looking at the camera

by Kelsey Thompson

I’ve been thinking a lot lately about the idea of independence.  Here in the United States, this seems to be a value we hold quite dear.  It’s a quality we admire and toward which we strive.  We seem to particularly enamored with stories of people who are self-sufficient, giving the impression that they take care of themselves without help.  This is abundantly true for those of us with disabilities who have literally fought for our independence in communities, employment, civic participation and technology, fueling revolutions like the Americans with Disabilities Act (ADA).  At the heart of that battle is a desire for independence.

The ADA was signed when I was ten years old.  It’s safe to say that I don’t remember much about what life was like pre-ADA.  I’ve been spoiled, in this regard, to have come of age in a time when people with disabilities like myself have opportunities like never before.  I’ve had a disability since birth and, growing up, I was a fierce fighter for my independence almost to a fault.  I loathed accommodations or assistance of any kind.  I saw “special treatment” as a weakness and I hated the feeling of needing help.  I craved self-reliance.  If there was even a remote possibility that I could do a task on my own, I had to do it on my own, even if that meant taking twice as long or terribly inconveniencing myself.  I was stubborn.

My disability is a vision impairment.  I’m legally blind due to a genetic condition called oculocutaneous albinism.  While I have a fair amount of usable vision, I have some limitations.  I use assistive technology to read printed materials and access the computer, and I’m not able to drive.  I’ve had several decades to get used to these things and before I had kids, I felt pretty comfortable managing my life.  I had the illusion of being independent.

In my 30s, I became a mother to two amazing children – one is now in preschool and the other is wrapping up third grade.  Here’s a glimpse of what our life looked like a few short months ago: my husband and I both work full-time jobs.  We have an apartment on the outskirts of Chicago where we live in a community that’s diverse, walkable and alive with businesses, restaurants and bars.  Our youngest kid goes to preschool at a daycare center at my work.  He and I are pros at traveling on public transit or via rideshares.  I used to get a secret joy every day when I went down to pick him up at daycare, strap him into his car seat or stroller and zip off to pick up my daughter at her after-school program.  It made me feel like every other mom to be able to do these things, even if I did have to do them a little differently.  Still, nondisabled parents will never understand the sense of accomplishment I’d enjoy when I was able to independently do the things that they do.  The sense of pride comes on a dopamine rush, like sneaking into a movie theatre or cracking a combination lock.  I had the sweet illusion of being self-sufficient as a mother.

The COVID-19 pandemic hit my state in early March.  That’s when life came to a grinding halt.  Schools, restaurants, playgrounds, libraries all closed.  Public transit and rideshare services suddenly became quite scary.  As an essential worker at a healthcare facility, my options to be home with my kids were limited.  I was blessed to have a boss who did his best to offer flexibility and support, but there was still the ever-present pressure to get to work – and how to get there.  I wasn’t comfortable with the risk of taking the bus or an Uber to work and reluctantly accepted help from my husband, who started driving me in to work.  I felt like a failure.  There I was, a grown woman with a great career who needed to be driven to work like a child.  I saw with disappointment that if I wanted to continue to care for my family and do my job, I had to sacrifice some of this sense of independence.  The days of strapping a kid into the stroller and power-walking off to the grocery store were gone.  Now I rely mostly on grocery delivery services, another ego blow (despite the undeniable convenience).

Over the last couple weeks, I’ve thought about this a lot (because what else is there to do during quarantine but think?).  I see now that I’ve never been truly independent.  None of us are.  Simply because I don’t have to utter those dreaded words, “Can you help me out?” doesn’t mean I’m winning the battle for independence.

But I think if there’s a revelation that we’ve all come upon during this pandemic it’s that no one is self-reliant.  We all depend on others to live our lives.  And that’s not a sign of weakness.  On the contrary, it’s these connections with others that enrich our lives with meaning and unpredictability.  I’m working on making peace with that.  As we gradually start to see open signs light up and neighbors tentatively stepping back into the world, I’m going to be looking for these little connections.  The barista who makes the perfect latte, the bus driver who empowers me to get to work, the utility worker who ensures that the crosswalk sign functions at the busy intersection in front of my hospital, the teachers who care for my kids – I depend on all of them to get through my day.  We all lean on each other.  And it’s a privilege to know that I have people on whom I can depend.

Parenting During Social Distancing for the HoH Parent

by Ellen Levitt (April 2020)

As a veteran New York City public high school teacher, I’ve worked with several HoH (hard of hearing) students, especially at Murry Bergtraum High School in Lower Manhattan, where American Sign Language was a Language offering. Some HoH students had signers who travelled with them from classroom to classroom, others didn’t, but they were a regular presence in my social studies classes in the 1990s. My typical strategy was seating these students within the front row, and I would make eye contact frequently.

When I was a high school student myself, I was in classes with HoH students (and others who had a variety of physical disabilities, including cerebral palsy and legal blindness) at Edward R. Murrow High School in Brooklyn. Being around students who had different types of physical abilities made all of us more aware of how people adapt and achieve in their own manner.

Recently I interviewed S, who is HoH, a single parent of three school age children, and a Murrow HS graduate like myself (although our years at the school did not overlap). S has been documenting on social media, often humorously, what it’s like to deal with children during the Coronavirus pandemic and social distancing. His two daughters are ages 12 and 11, and his son is almost 8 years old.

Online learning, especially when it is the primary form of education, has pros and cons. If the child has regular access to a device, be it a desktop, laptop or pad/notebook, and has reliable internet power, then the situation is certainly workable. Students are getting their assignments online in a few different manners: often they get posted written assignments and email in homework; sometimes they “attend” live or pre-recorded lectures or interactive teleconferences, or watch assignments culled from the web, YouTube or educational websites.

For any parent, there can be difficulties in making sure the child or children are doing their work, understanding the course material, and being disciplined enough to get through material. Add in the different atmosphere, the changes in socializing, and related issues, and it can be difficult. How is it for a family of three, with a parent who is Hard of Hearing, even if the children do not have special needs?

Here are some of S’s thoughts on how the current social distancing limitations have impacted his family life and his children’s education:

1. What are some difficulties you have with getting your kids to do schoolwork and chores under quarantine?

Haven’t really had too many difficulties. They’ve helped out a great deal because we’ve all been home a lot. The main difficulty is getting the kids to stop playing Roblox or Fortnite, or watch YouTube during class. I’ve caught all three doing it, and it’s very frustrating.

2. How does being a parent with HoH impact dealing with teachers and other school staff?

It hasn’t really impacted my interactions with them. Probably because there isn’t much these days! In the past it was all on the phone, and I don’t “do phone” too well because I’m deaf. Now they’re all receptive to text, WhatsApp chats, etc.

3. How would you compare your children’s experiences with school to your own?

I went to school during a time when there wasn’t the internet. The internet didn’t really take off until I got to college, so it was a dramatically different time. My oldest loves doing (schooling) remotely, from her bedroom– in fact, a bit too much!

4. Other thoughts?

It will be interesting to see if any innovations come out of this that are carried over when we lift all this social distancing stuff because of the coronavirus. One thing that I think is overlooked is interactions with fellow classmates. That’s hard to do in a Zoom classroom with 15 other kids. However, my daughters have private chat rooms with their classmates (no teachers) so they can ask for help from classmates if needed. However, it’s not the same as person to person contact.

S has posted on Facebook about what the New York Times has labeled “the parental stress of remote learning” and general disciplining of children now:

“Homeschooling Day 14: Today’s lecture series consists of “No, You Can’t Wear A Balloon Giraffe To Class.

Homeschooling Day 12 Update: Sent kid to office. He threw a temper tantrum because I couldn’t look at the painting he made for me in “class.” I was busy cleaning up the paint that he left all over the chair, the dining room table, and the floor…

Today’s lecture series consists of “Watching YouTube Does Not Count As Homework.”

Homeschooling Day 9 update: Today’s lecture series is entitled, “You Can’t Play Roblox During Recess Because You Already Spend Six Hours A Day on the Laptop In Class and You Want to Spend MORE Time On A Screen?

Homeschooling Day 4: Our homeschool curriculum includes my lecture series entitled “Yes, You Still Have to Brush Your Teeth Even Though We Aren’t Going Anywhere.” Also, when you look around for the math teacher and then realize…you’re the math teacher.

Homeschooling Day 3 Mini Update: Had to suspend a kid for dress code violation (wore pajamas)

Homeschooling Day 3: Two students suspended for fighting. Teacher fired for drinking on the job.

Homeschooling Day 2: Trying to see if I can get kids transferred out of my class,

Survived Day 1 of Homeschooling. Barely. Lol. Playing Rummikub with the kids!

It is also tiring and challenging for S to do his own work (which is now online) while juggling his kids’ schooltime. This is parental engagement amped up ever stronger. The roles include not only teacher but counselor, cafeteria worker, technical support and more.

S and all other parents are concerned about their children maintaining their studies and not falling behind (or not too much). The short term and long term impacts will no doubt be analyzed in the months and years to come.

Bipolar Mother Makes the Best of It During COVID-19

by Laura Yeager

I am a parent with a disability, but my disability is hidden. I’m a 57-year-old woman who has had bipolar disorder since 1991. In years gone by, I had severe symptoms, but for the past five years, I have been mostly asymptomatic. This is due to a good psychotropic cocktail consisting mostly of Depakote and years of experience that have mellowed me, as they mellow most folks pushing 60. 

For those of you who don’t know, bipolar disorder is often characterized by a fluctuation between mania and depression. During a manic episode, the individual has a great deal of energy, happiness and a feeling that she is “on top of the world” and can accomplish anything. During a depressed episode, the person feels sad, hopeless and devoid of any energy.

I don’t need to remind you that we are in a pandemic, the COVID-19 crisis, of 2020. We have been under a “lockdown” in Ohio since March 10.  This means we’ve been housebound and have only left our home to go out to exercise (walk around the block) and go to the local store. I’ve been working at home as a university writing teacher. I’ve been functioning, but not up to my usual standards. 

My son is 15. He’s been doing online schooling and has been faring pretty well. His mood is high and he’s basically a joy to have around because he’s funny, smart and spontaneous. 

This is helpful when you’re a little depressed. I have to say that this COVID-19 crisis is making me down. Becoming depressed during the coronavirus crisis could happen to anyone, but when you’re prone to depression, it makes it much worse.

 My current depression is characterized by wanting to sleep. I could stay in bed 24/7. I’ve also been feeling fearful, wondering when this is all over if I’ll have the wherewithal to leave my house. I’m afraid that I’ll be stuck in “hermit-mode.”

But life goes on; it has to, so I’ve been doing things to undercut my depression. 

One thing I’ve been enjoying is coffee. This may sound trivial, but hot, steaming coffee is one of my saving graces. My husband purchased a huge bag of vanilla-flavored coffee, and I’ve been sure to have a cup or two every morning. This wakes me up a little, takes the grogginess out of my system. Honestly, I feel less depressed after my morning coffee ritual.

Another thing that’s been helping me stay “undepressed” is taking a shower every day. Again, this may sound trivial, but because I don’t have to leave the house, it’s not imperative that I keep up my grooming schedule. My family will forgive any untidiness or slight body odor. But I’ve been noticing that I feel a slight boost of energy after I shower. The water is stimulating, much like the coffee. Of course, my hair, like many folks’, is unruly and showing a lot of grey, but it is, at least, clean. 

A third thing that helps with depression is exercise. I’m not walking every day, but I do go out about three-four times a week. Two days ago, it was 35 degrees, and I ambled along without a hat. My ears froze and my cheeks tingled. But I wasn’t depressed. I was energized. Now, today, it’s going to be 60 degrees. I’ll be sure to try to walk today.  (Those temperature fluctuations are typical of Ohio weather. We Ohioans like to say, “That’s Ohio for you.”)

But what is really keeping my depression in check is the fact that I have a child who needs me. My son is on the autism spectrum and needs extra attention.  

Today is Monday, the day the school work for the week is posted. I made it a point to give him a lesson in time management. I stressed the importance of signing into google classroom and reviewing all the work he had to do for the week.  Then, I told him to prioritize the assignments and decide what he’d do today and for the rest of the days of the week. And my lesson was successful. Currently, he’s reading his American History assignment.

The act of focusing on someone else is the real key to overcoming my COVID-19 depression. I thank God for my child every day, but these days, more so. It is during times of crisis that family becomes so important. We take care of ourselves, but we also take care of each other. It would be much harder to be alone during this pandemic.

In conclusion, the coronavirus is aggravating my disability, but I’m finding ways to get through it.

My son is my salvation.

 God, I love him.

It’s Hard but It’s Worth It

by Heather MacMurray

I haven’t always been disabled, but my sons have never known me not to be. They are ten and seven years old and, as far as they know, I have always been in a wheelchair and had minimal use of my limbs. The older one may have early memories of me, but by the time the little one started to walk I was a full-time wheelchair user.

I got my first travel wheelchair when I was pregnant with my first son and my first scooter when he was an infant. The infant phase was tough. When we were at home I spent most of my time on the floor with my boys. Playing, reading, changing diapers were all things that we did on the floor. There was a very small period of time when I was able to push a stroller. When we were out and about it was my husband, dad or a friend was pushing the stroller until they grew big and robust enough to sit on my lap while I was moving. Since then, when my youngest was an infant, I’ve parented exclusively from a seated position.

First off, I often feel that other parents are the worst. I’ve gotten used to erasure and to being dismissed.

I’ve seen the disabled parking spots occupied by the able-bodied when I’ve gone to pick up my kids from preschool, the offending parents shrugging it off by saying it was just to pick up the kids, never mind the fact that that I had kids to pick up as well.

Public playrooms have been physically blocked off by furniture so that other people’s kids can play. I’ve lost count of the number of times I’ve been blocked or run off the sidewalk by strollers or large groups of other parents because I’m either invisible or assumed to not be a parent. People jump in front of me in lines, which wouldn’t bother me as much if I didn’t have my children with me. It’s hard and it hurts, but it’s worth it.

Though not as painful, the day-to-day operations of parenting while disabled require serious discipline. Being organized doesn’t come naturally to me, but it’s essential for getting things done that I can’t physically do. Each day begins the night before, I make sure my boys’ homework is done and in their backpacks, get their clothes for the following morning, and make sure anything required for activities for the next day is either accessible to me or visible to my husband or kids. I have to have an inventory of every single thing so that my husband, who works from home, wakes my boys and makes them breakfast and lunch, doesn’t have to. Once the boys are ready to go my husband gets me out of bed. I dress as quickly as I can, whilst yelling at the boys to brush their teeth, comb their hair and put on shoes/coats/backpacks so we can get out the door. I’m a loud person so I’m pretty sure I’d be a yelling parent even if I wasn’t disabled, but I have to yell a lot to make sure I’m heard since I can’t always get in their faces to move things along.

We are fortunate to live within walking distance of my boys’ school as well as the majority of their activities so me not being able to drive anymore is less of an issue than it could be. It also allows me to participate in a way that would be difficult for many disabled parents. An example being that I volunteered in their classes until last year, when I thought that my Multiple Sclerosis had advanced to the point where I felt I couldn’t actually help anymore.

It’s convenient, albeit bittersweet, that my boys’ demands on me physically have diminished as my disability has worsened. The little one is still a frequent catcher of rides on my lap, as well as doing his homework while using me as a chair, something he calls the “mama chair.” The big one is already a grumpy tween at 10 but still sometimes sits on my lap when no one is looking. This is the time that terrified me when my boys were babies and I was more able-bodied – when they would be old enough to fully get how different I was from other moms and maybe feel ashamed of me. But my sweet boys have shown me that my love for them and my determination to parent well made them happy, well adjusted, and just a little bit embarrassed by my wheels.


This Spring I Became a Mother

by Savannah Logsdon-Breakstone

This spring, I became a mother. My baby, Othello aka Theo, is almost 8 weeks as I’m writing this and is a pretty great baby. There have been times in my life where assumptions were made about my ability to parent because of how being Autistic, or my trauma history, or my chronic illnesses impact my life. But ultimately, I’ve found it fulfilling. The people who doubted me before have seen me take the steps I need to in order to parent, even if it doesn’t always look like what they expected. A lot of that has involved identifying what my needs are, what baby’s needs are, and cobbling together strategies to parent successfully based on that. In some ways it is a bit like the other areas of life where we have to build accommodation strategies.

But accommodating yourself while parenting is different from school or work. In school, you could go to the disability resource office with a specific list of accommodations and your supporting documentation for those, and presumably the school would then make sure they or some variation thereof were in place. Usually with a lot of trips to the Disability resource office and hassling them for follow-through, but it was on them to implement the big accommodations involving others. In work there’s less support, but you still have a certain amount of give from them. Parenting is not like that. You have to build and implement it yourself. Babies can’t make your accommodation plan and implement it. They also can’t tell you their own needs directly, just act, so you have to use your knowledge plus those actions to figure things out.

That’s not to say co-parents and family can’t help, but they also aren’t HR or the disability resource office. I depend on my nesting partner, Greg, a lot. He takes a “shift” of primary responsibility a day, and we do one not-at-the-breast feeding a day to ensure I get at least 3-5 hours’ uninterrupted sleep so that my chronic illnesses are in check and my mental health stays stable. When he’s home, he might change the diaper after a feeding so that it gets done faster— my hips sometimes take time to work after sitting a while. My mom usually comes by once a week, and my siblings love to watch my son, be it with me there or, for short periods of time, solo. I have a lot of support.

But I also read up on baby care, had experience helping directly and independently with the care of one of my nieces, watched videos, and did what I could to learn what needs the baby had, and what sort of parenting strategies I could and wanted to adopt and where I had to build it myself. I can then bring that knowledge to Greg, or to the baby’s father Timotheus, or even to my mother or siblings, and get support if I need it, but much of it I still am implementing myself. I can’t expect my supports to do that base learning for me, even if I needed support to learn it, nor all the implementation. Even if I had more formal supports like staff, I’d have to work with them about how I could gain the basic knowledge and how I could implement it.

I have had to apply what I have learned about my own learning, my own needs, and what accommodations work for me in this process in addition to basic baby care and safety. If I can’t figure something out, I know enough about my needs and baby’s needs to ask for help troubleshooting. Unfortunately, there are few disability-specific materials, but in the end a lot of what I’ve needed to learn has been things that weren’t disability specific plus the knowledge of my own needs that I’ve acquired from the rest of my life as me. Besides, we all have to adapt the knowledge we gain even from the disability-specific resources out there because we as disabled people aren’t cookie cutter creatures.

The thing is, the specific strategies might be adapted, but this is a learning curve for all parents. All of us have to learn how to adapt our varied lives and approaches when we become parents. All of us have to learn basic baby care and what our specific baby’s needs are. Sometimes that involves different supports and different balances of supports, but it’s something all of us have to do.

Babies’ core needs are pretty standard ones. You need to feed them, keep them clean, and provide a baby-safe environment. You have to provide cognitive stimulation appropriate to baby’s needs. But none of it—not even “natural” things—is something any of us have baked in. We all have to learn how to take care of our babies- some of us just have to build our own strategies on top of that. It’s putting in that effort to learn and adapt to life with baby, whatever way you learn and whatever those adaptations look like, that demonstrates your parenting. That, and love.

Michael and Mommy Make a Powerful Team

by Shirley J. Davis

When Michael came into my life, I had been using a wheelchair for seven years after a stroke. Although normally associated with the elderly, strokes at a young age are common in my family and I had become the latest victim.

At first, life with Michael wasn’t hard at all. I changed him, fed him, and loved him, relishing having a child of my own. However, when he began to crawl and then walk, life became much more complicated.

Michael had to learn not to get in the way of my wheels, and I learned to be on guard for his sudden movements that could get him hurt. When he became a toddler, I feared he would get away from me outside our home, so I bought a child’s safety harness. People looked at me oddly, perhaps believing I was being over cautious or cruel. If I was, I do not apologize because my son has not only survived but thrived to become the ripe age of four.

Of course, not all life with Michael and the wheelchair has been hard; there have been plenty of fun times, too. One example is when Michael first began to ride on the back of my wheelchair standing on my roll bars. He would squeal with delight as I rolled quickly down the sidewalk or around the apartment. We have built tents using my wheelchair as the frame and spun around in circles, he on his feet, me in my chair, until we were both dizzy.

One day, when Michael was three, we were attending a family gathering where there were other small children. One of the cousins, who was around five years old, began staring at me, obviously confused. He approached me and asked me why I was in the wheelchair. I smiled big and answered that I had been sick and that I bet he has wheels at home too. That seemed to satisfy his question, and he ran off to play. When I looked around at Michael, he seemed upset. I called him to me and asked what was wrong. He answered that he didn’t like his cousin staring at me. I kissed him on the forehead and explained that not everyone had a mommy who used a wheelchair—a fact that he had never considered. Before long, he was back playing with the other kids, and I smiled to myself at his innocence.

There are some limitations on where Michael and I can go. Even with the ADA requirements for ease of access, some things such as going to a county fair are too difficult for me to do. The huge cables of wires lying all along the fairway are impossible for me to navigate in my chair.

One evening, my brother took Michael to our county fair. Upon his return, my son spoke avidly about how much fun he had while riding the rides and playing fair games. I couldn’t help but feel bad as I so much wanted to be part of the fun.

I wouldn’t trade a moment of my life with Michael. His smile and giggles light up my world. We make a great team, I a single mother and he a rambunctious little boy, working together to enjoy each other today and form a wonderful future for the both of us.

When We Were All Disabled

Miles Townes walks alongside trees with his daughter on his shoulders

by Miles Townes

Twitter: @oppidus

I am a disabled person, and also dad to a boisterous daughter. She is three—both her age and hurricane strength.

On a recent chilly morning, I took her to a park near us, so she could run wild for a couple of hours. The playground is a model of accessibility: two acres for children “of all abilities,” with equipment specifically for kids who use “wheelchairs, walkers or braces, or who have sensory or developmental disabilities.” It is an amazing place.

We are potty training, but she resists because toilet seats are always too big and too cold for her. I figured this park, for all its accessibility outside, must have something pretty special in the stalls. So I ducked into the restroom.

Instead, I found stainless steel toilets with no seats. The park’s designers chose the coldest, scariest toilets possible—prison toilets. To use these toilets, I need a separate seat for my child. Since I did not bring that seat, I made sure she had a diaper on.

The toilets crystallized something for me: my daughter is technically disabled, simply because her world is not built to be accessible for people her age and size. She is excluded in ways very similar to, and very different from, my own bodily exclusion.

I am an advocate and activist—I was arrested in civil disobedience in 2017—and I pay attention to what other disabled people say online. We often suggest abled people need to understand disability justice because they might become disabled as they get older. This bothers me because my disability is often geriatrized: I’m always “too young” for my impairments, even though some people experience them from birth.

I also know that most people are not good at predicting their future needs. They are no better at imagining their own disability than they are at imagining ours.

So what if we ask them to remember, instead? By the social model, our disability is the consequence of society’s decisions to exclude and ignore our needs. As a disabled dad, it is clear to me that society largely excludes and ignores the needs of children.

Some exclusion is reasonable, for sure: I don’t want my daughter to unlock doors or unbuckle her car seat, or have access to sharp knives or toilet cleaners. But there were also a lot of changes we did not make to our house that would have made it more accessible to her. Like most parents, we excuse our inaccessibility with the expectation that our kid will grow up.

Outside our home, things get worse. Zero public toilets are accessible to small children. Even “family toilets” do not accommodate small bottoms. More than once I have kneeled in front of a toilet, holding my child up as she pooped, eyes watering with pride, disgust, or both. Most transportation is inaccessible and profoundly dangerous to children. Feeding small children in public places is often difficult. She will face these sorts of barriers until she is more or less adult-sized, a long time from now.

I have been disabled for twenty years or so. I guess I am inured it. I am used to working around and through the ableism I face, used to downplaying the barriers I face. But I find I have zero tolerance for the barriers my daughter faces. Where steel toilets would be inconvenient before, in dad mode I find them inexcusable.

It is not that I think we should rebuild our society around the needs of children. But my experience of being disabled primed me to see her experience in terms of disability. More and more, I see in her childhood a genuine experience of disability, at least by the social model. Temporary disability is real disability.

When I realize that every person in our society has that experience, more or less, I wonder if that gives disabled people leverage in our work for justice. Rather than asking abled people to imagine old age, could we ask them to remember when they were young? The same way we warn them society is not made for the old, we can remind them that society is not made for the very young.

Of course, the experience of childhood does not generalize to all experiences of disability; this is not an all-purpose tool. And there is a risk that talking about the disability of children might help infantilize disabled adults, and abled people need every discouragement from that. But geriatrizing disability is just as problematic, in my experience.

The answer, I think, is to confront infantilization head-on and even turn it around: if abled adults refuse childhood’s limits, why should disabled adults accept them? Shouldn’t our society be built so that all adults have the same autonomy and agency?

Because of my disability, I can rarely find restrooms that are comfortable for me. Some day my daughter might ask me why I hate public toilets so much, and I will remind her of those times I held her, grunting and wiggling, over a toilet bowl she was too scared to sit on by herself.

I will tell her: the same way that restroom was not built for you, it was not built for me. And that, more or less, is what ableism does. Being a dad helped me see that much more clearly.

My Son and Me

by Jennifer Senda

When my son was born, I was asked a million questions, like “How will you change his diaper?” or “What if you drop him?” To a first-time mom with lots of anxiety regarding those exact questions, each inquiry was like a dagger to the soul because I had no idea how I was going to handle those things, but I knew I had no choice: they would be handled.

Now I don’t want to deceive you into thinking that I am Supermom. There is no one in the world who fits that title, disabled or not. But I will say this—I handled it. Parenthood has been quite a journey thus far, but I am unwilling to surrender. Tell me it can’t be done, and I will find a way to do it. I am that mule-headed, a quality my son seems to have inherited, and I am glad.

Fast-forward eight years. My son is the coolest person I have ever met. He is inquisitive, full of joy, and very opinionated. He also has ADHD, and if I’m honest, our journey through this process has not been easy. There are a lot of elements to his condition that I am just beginning to understand. He has anxiety which is hard for me to see as mother. A few of his triggers include me because he is aware that the world isn’t as accessible as it should be. Ramps should be everywhere in his opinion, and I am in total agreement. As to whether my son notices a difference between us, I am sure he is fully aware of my disability; it’s kind of impossible to hide. He knows the meaning of words like transfer, manual chair, power chair, and spasms. ​Is he being exposed to too much? I don’t believe so. He can learn to be patient with himself by witnessing my particular challenges. I try to answer his questions with as much sincerity as is age appropriate. Keep in mind, though, that many children with ADHD have no filter. Redirection is constantly necessary, and both his energy and his questions seem relentless.

I have cerebral palsy, and as a woman who went through 37 weeks of pregnancy with this condition, I can tell you disability is not for the faint of heart. Sometimes, however, the pain and fatigue that often comes with our various conditions can make the average person want to pass out.

That said, however, my son and I are not inspirational. He handles what life has thrown at him with such grace. He is an example and a motivation for me. Yes, he struggles academically, but he pushes through it. Sometimes he is totally unaware that he’s being persistent, but I am. I see him and I am so proud! He is my joy and my heart.

My biggest gift is the privilege of watching my son grow and seeing his personality flourish, despite the IEP meetings, the therapies, the spasms and the lack of access that are seemingly inescapable factors in both our lives.

By the way, I love you, mom and dad! Thank you for not allowing me to surrender to self-pity. Thanks for leading by example. I hope my son learns from me as I learned from you. And to the parents and would-be parents with disabilities out there, thank you for being my people. I have realized that I am not alone in this journey. Reading and listening to your stories has been an amazing educational experience. Thank you.