being a parent with a visual disability
I was declared legally blind two weeks after finding out I was pregnant with my first child.
Some moments in life split you into a before and an after. That was one of them.
Pregnancy is often framed as a season of anticipation and joy. For me, it was both joyful and tumultuous — filled with fear, uncertainty, and a profound sense of isolation. I lived an hour away from family and friends, had no meaningful emotional or logistical support, and had very few resources to help me navigate both pregnancy and vision loss.
I had been diagnosed with Stargardt’s Disease at age ten or eleven, and connected with the Bureau of Education & Services for the Blind (BESB) back then. At the time, I didn’t need their services, because I still had plenty of vision. But suddenly, at 27, I did — and fast. Pregnancy compounded that shift.
When my baby arrived, I started to feel trapped in my home. Walks were possible, but that was about it. I realized my favorite health food store was within walking distance — something I never considered when I could drive. That became my small excursion, though that meant spending money. Simple parenting conveniences that most take for granted — driving a baby around until they fell asleep, trips to the park or the store, even a spontaneous visit to the beach, or to see Grandma— were no longer possible without significant planning, coordination, and help.
Even being outside with my child brought new anxieties. On weekends when rides were available, I could take him to the playground, but I couldn’t actually see him. Shapes and movements, not faces or expressions — every cry or scream made my heart race: was that my child? Was he okay? I had to stay close, which might have looked like helicopter parenting to an observer, but in reality, it was survival. I simply could not rely on sight to ensure his safety.
We eventually moved closer to family, which helped slightly, though life didn’t magically become easy — people have their own schedules, priorities, and limitations. Then came the second child, along with dance, acting, and school sports. Transportation became a constant challenge. Schools had no solutions because my disability wasn’t theirs to manage, but my limitations still affected my kids’ participation. Statistically, tens of thousands of adults aged 21–64 in my state alone have a significant vision impairment. These are the adult “working years” — family building years — and there are very few systems in place to support parents navigating these times. I have spent collective days on the phone with countless organizations seeking help to get me and my kids out and involved in life. But there would always be something that disallowed qualification. Largely, it was the fact that I had kids to begin with - they are considered a liability in organizations’ vehicles. Not only that, most organizations (in my area) help get you to doctors appointments, and one shopping plaza nearby. Well, what about my kids? What about an enriched life? What about getting them to the local concert on the green? To story time at the library? To get an ice cream cone? Being disabled does not mean that we are now reduced to only being able to have basic human needs met - we still want, and deserve, to engage in life just as everyone else does, and the fact that it affects the children of the disabled is a problem that needs fixing. To this pint, ride shares are of course a wonderful addition to our modern world, however, to the disable community that are on disability income, that is not a financial option.
Fast forward to my first born turning 16 and getting a driver’s license — a milestone every parent anticipates, but one that brought a new layer of logistical complexity. Because I cannot obtain a license, car insurance had to be placed in my son’s name. In our state, there is no alternative, which made the cost astronomical. Countless hours were spent on the phone with insurance companies, only to hear the same “state law” explanation over and over. What should have been an exciting transition became a stressful ordeal — and this is just one example of the unseen burdens parents with disabilities navigate.
As time has gone on and my vision has further degraded, even something as simple as a walk alone has become risky. On one outing, I twisted my ankle in a pothole I couldn’t see, fell, and narrowly avoided a passing car. Walking with my younger child is possible, but I am constantly balancing independence, safety, and the need to ensure my kids understand my limitations without ever feeling responsible for them.
Over the years, I’ve built a network of support: friends, neighbors, even a nearby church offering transportation assistance despite no formal affiliation. I’ve learned to communicate openly about my limitations and advocate for creative solutions. I’ve found ways to watch performances from backstage, attend games with binoculars, no matter how close I was and how ridiculous it looks to others, and ensure my kids’ participation while honoring my own boundaries.
Even with strategies, stress, fear, and heartbreak remain part of the equation. I can’t always see what’s happening inside or outside. I’ve lost count of how many times my children were reprimanded for things I thought were happening — and weren’t. Being a parent with a disability demands constant adaptation, communication, and reflection.
These are realities few consider, which only feeds the isolation that often accompanies parenting with a disability.
This is why small talk rarely feels meaningful to me — I don’t want to hear about your day at work or talk about the weather. I want depth. I want to know what brings you joy, what challenges you, and how you navigate your own limitations. I want to know how we can open our eyes a little further — together.
I carry no shame around my disability. I’m an open book. I share these experiences to hopefully influence a shift in thinking about disability, parenting, and community. To remind anyone navigating similar circumstances: you are not alone, your challenges are real, and your contributions — as a parent, advocate, and human being — are valid.
Parenting with a disability is demanding, sometimes heartbreaking, and always instructive. It teaches resilience, creativity, empathy, and above all, the importance of community. It reminds us that independence is a spectrum, and asking for help is not weakness — it is wisdom. And your children are learning such incredible life skills watching you do what you do. It may be by default, but that does not take away from how powerful it is that you are raising aware, compassionate, patient, kind, autonomous, pays-attention-to-details human. That is who you are putting into this world.
The numbers of parents with disabilities are greater than most realize. And if we shift our thinking, advocate for systems that recognize these challenges, and acknowledge the nuance of lived experience, we can begin to transform not just how we parent, but how society supports those of us doing the work of raising children while navigating life differently.
Reflection & Action: Navigating Parenthood With a Disability
Parenting with a disability can feel isolating and overwhelming, but there are strategies and perspectives that help lighten the load while fostering confidence, connection, and resilience.
Reflection Prompts
Take a moment to journal or discuss these questions with a trusted friend or coach:
What are the tasks or moments in parenting that currently feel most challenging for me?
Where might I ask for help — even small ways — that I haven’t considered?
How do I notice my own stress and frustration when managing my limitations? How can I address it before it affects my children?
Which community connections (friends, neighbors, local organizations) might I nurture or create to provide support?
How do I model adaptation, flexibility, and problem-solving for my children?
What assumptions about independence and “doing it alone” am I ready to release?
Practical Steps
Build your support network intentionally. Identify people, organizations, or resources that can assist with transportation, childcare, errands, or school activities. Even occasional support can make a big difference.
Communicate your needs clearly. Let teachers, coaches, and other parents know about your limitations and the ways they can help. Early, honest communication reduces misunderstandings and stress.
Leverage technology and adaptive tools. Screen readers, mobility apps, smart devices, and organizational tools can create independence and streamline daily tasks.
Create “safe spaces” for your children. Whether it’s a playground strategy, classroom plan, or home routine, consider how you can ensure their safety while honoring your abilities.
Celebrate small wins. Every successful outing, performance attended, or challenge navigated is progress. Recognize and acknowledge your efforts, not just the outcomes.
Practice self-compassion. You are learning constantly. Mistakes and setbacks are inevitable — but they are not failure.
Be open and honest with your children about your disability. Explain, in age-appropriate ways, what your limitations are and why certain tasks may require adaptation or assistance. This empowers your children to ask questions, develop understanding, and recognize the barriers you face — all while fostering empathy, problem-solving skills, and a collaborative family dynamic.
Invitation
Parenting with a disability requires advocacy, creativity, and courage. Your experience can also open doors for greater awareness and systemic change. By reflecting, asking for support, and modeling resilience, you are not just navigating your child’s world — you are shaping a more inclusive future for families like yours.
