The National Advisory Board (NAB) on Improving Healthcare Services for Older Adults and People with Disabilities is committed to hearing diverse perspectives and opinions from individuals worldwide and acknowledging that the experiences of others help everyone learn and grow. Although we believe that disability is a natural part of life, we also recognize that having a disability can contribute to a variety of opinions, challenges, and triumphs that shape our lives.
This Developmental Disabilities Awareness Month, we are delighted to have Jessie Carver as our guest blogger. Jessie is an attorney, a proud mom, and identifies as having a developmental disability. The opinions expressed by Jessie are her authentic perspective and we value her life experience, as well as her willingness to share it.
Jessie Carver’s Experience: Parenting from a Place of Disability Culture
About a month ago, my almost three-year-old son said to me, with tears running down his cheeks, “Mama no walk.” This was the day my son realized his mama is different from other mamas. For the first time, he noticed that his mama uses a wheelchair and does not walk like most other mamas he’s been exposed to. I sat with his words for a moment then wiped his tears, gave him a hug, and told him it was going to be ok.
March is Developmental Disabilities Awareness Month and focuses on individuals with intellectual and / or developmental disabilities. In our family we celebrate it by just being us and setting an example that individuals with developmental disabilities can be thriving parents or anything else they want to be.
Let’s be honest; there are not many visibly disabled parents out there! I have Cerebral Palsy and, as a result, use a power wheelchair to get around. I’ve mostly lived in urban communities and only seen a handful of other parents who share my disability. In fact, finding disabled role models, let alone role models that are disabled parents, is like winning the lottery. It’s rare.
I’ve seen numerous social media posts from perspective parents with disabilities (mostly outside the U.S.) who are told they cannot have children because a medical professional has deemed them unable to care for a baby. Similarly, individuals with disabilities are often not selected as adoptive parents. Parenting is hard work, and I’m not going to lie; at times can be stressful. I don’t think any parent would deny that, but hearing these stories elevates the stress for parents like me. As parents with disabilities, we often worry that someone, such as an estranged partner, relative, or government agency, will question our ability to parent because of our disability and potentially take our child away.
We continue celebrate disability and increase awareness through days and months of recognition like Developmental Disabilities Awareness Month, but I’m not sure that we’re changing the status-quo if we’re constantly talking about basic human rights, needs and letting people with disabilities live out their dreams. With all the negative connotations and misconceptions, disabled parenting can be scary. We need to take a hard look at how we as a community, as allies, and a society can really move the needle to decrease ableism and increase respect and success for parents with disabilities.
I believe that it is our culture that distinguishes parents from one another across the globe. As an individual with a disability, I’ve spent my entire life adapting to a non-disabled society. It’s become a part of my culture and as a parent with a disability, I’ve embraced what I call “adaptive parenting”. I foster independence and pride as my parenting cultural norms.
For our family, parenting with a disability means we have lots of moving parts that allow us to achieve our maximum level of daily independence. For me, since I have limited upper body strength and impaired fine motor skills, I use the help of a nanny for most tasks. Fortunately, I have a husband that works from home and can jump in whenever needed. Inevitably, our kiddo seems to always need a diaper change ten minutes after the nanny leaves for the day.
Since I’m unable to do most physical tasks for my child, I must be creative and find other ways to participate and connect to his world. For example, while I cannot change his diaper, I can pull my wheelchair up to his changing table while he’s being changed and talk him through it. Help keep him calm and like many parents, I’m looking forward to transitioning out of the diaper phase, but not just for the usual reasons. I’m looking at it as something that will greatly increase our independence together.
Another example, I’m not able to lift my little one up, but he’s able to climb up on my lap and enjoy a ride when he wants a ride, he asks, “mama drive”. In my opinion, one of the pillars of adaptive parenting is the power of language. Since I am unable to encourage or discourage behavior through physical action, I instead have found ways to use language with my child which I have found teaches him age-appropriate behaviors and skills.
As a family, the three of us encounter challenges with access daily. Many things we didn’t realize before becoming parents. For example, we have noticed how rare it is to find a changing table in the men’s restroom, that indoor play spaces can often be inaccessible, and that attending birthday parties at people’s homes that aren’t accessible can be a barrier to participating. When my son is invited to a birthday party will I be able to accompany him? Is the house one level, does it have steps to get in?
Currently, we are looking at preschools for next year, many of which are private and lack basic features such as an elevator. Fortunately, progress is being made to increase accessibility, but thinking about access from a disabled parent perspective is rarely taken into consideration. That’s why I get excited when a new outside playground with universal design components is opened. This type of play space enables me to chase my son around just like non-disabled parents. I’ve also noticed that new swimming pools have zero-level entry or a lift available. Slowly, society is becoming more inclusive of disabled parents and frankly anyone who can benefit from accessibility.
What can we do as a community, and as allies to be more inclusive of parents with disabilities? We can simply strive to be more accepting. Since it’s rare to find an individual with a developmental disability in a parental role, there is sometimes a bit of shock experienced from others when they find out I’m a parent. As a parent I do not seek to inspire, I just want to be treated like other parents and share my challenges of parenthood without judgment.
A couple of years ago, when my son was little, I shared a photo of him sitting on my lap in my wheelchair. The caption read, “isn’t he cute”. One of my friend’s replied with a link to a baby seatbelt that they thought I could use to strap to my son while on my lap. Seriously! I was expecting a smiley face emoji’s not unsolicited parenting advice. The point being that as a community we need to work to normalize parenting with a disability.
Despite all the ups and downs, I would not change a thing about being a parent with a disability. I’ll continue to deal with the lack of access, the weird looks from strangers when my son is riding on my lap, the stereotypes, and the random questions. My hope is that all these experiences help my child understand that disability is part of life and is part of what connects us uniquely as a family. I’m looking forward to my son telling others with pride, “Mama can’t walk, and she’s awesome!”