Please See Me as an Adult with a Disability, Not the Child You Wish I Still Was

I am a person with a disability (I have cerebral palsy, am an amputee, a wheelchair user and I also have an intellectual disability). I am 32 years old and have accomplished many things in my life, personally and career-wise. Whether it be the philanthropic work I have done throughout my life or changing careers in my late 20s to become a writer, one thing has always remained true — my mom has always been very overprotective of me. I get that honestly, I do. A parent will always see their children as their babies, no matter how old they are, disabled or not. I have faced infantilization for years by my mom and other family members because of my disabilities.

First off, what does this mean? Infantilization is when an adult is being treated like a child, even though nothing about their mental, physical, social, or intellectual wellbeing requires such treatment. Oftentimes, parents are guilty of this to some degree as their children are growing up, particularly when they are teenagers and trying to forge their path. For me, this includes having things done when I didn’t ask for them myself.

Let’s say I have a plate of food and I am struggling to put it in a pile. I will be working on doing that myself and even though my mom knows I am very capable of doing it, she will just take the spoon or fork out of my hand and do it anyway. My mom also wants me to do things that she thinks I want rather than actually asking me or giving me other options. I feel that some of my family don’t want to see my growth.

Recently, I was on the phone with my uncle who was telling me I need change, how good it can be, and how I need it to grow. If my uncle got a chance to really know me now and see how much I have grown, maybe he would better understand me. He said I was just comfortable where I was, which is true, but he tried to convince me that my mom and I should move closer to him in light of a recent tragic loss for my family. I get his concern and I heard him out but when I tried to voice my opinion, he kept repeating what he had said earlier. I ended up just “yessing” him. I didn’t know what else to do at the time. I just wanted our phone conversation to be over. I felt so invalidated at that moment.

I feel like no matter what I accomplish or no matter how independent I try to become, for certain members of my family and in society, I will forever be a child instead of a grown woman who has her wants and needs. I won’t be seen as someone who has grown so much from the 26-week-old baby fighting for her life. When people chose not to see that as a problem that they need to address, not me, I used to feel the need to people please. I felt like I had to do things to make others happy, and I have done that for far too long. It’s time I do things that make me happy.

I feel like oftentimes parents, caregivers, family members, etc. of those with disabilities see those people they love not as grown people with their own lives and needs, etc. but as they wish to see them — as children. It’s easier for them to baby them and still feel wanted and needed than encourage them to be independent.

I feel like I am not the only one that can relate to this. I wish families of those with disabilities and society would see us as we are, capable of so much. We deserve so much better — to see us as we are, not as you wish for us to be.