These are the 10 things I’ve learned in my unique position as a person with a disability mothering a child with a disability:
- Disabled is not a dirty word. It’s an accurate descriptor, not a negative. Our needs are not special. Our needs are the same as everyone else’s. We’re not anymore differently-abled than the rest of society. Everyone has various abilities, including abled individuals. The majority of the disabled community feels this way and would rather be called disabled. Me included.
- Becoming a mom encouraged me to get diagnoses and treatments for my own disabilities. This has benefitted both of us. My story makes more sense, and I’m able to make better decisions now that I’m informed. I’m also in a better position to help my son understand his own disability.
- Advocating for myself as a disabled person sets the example for my disabled child. This sets him up to understand his worth and how he can advocate and shows him how to do it for himself.
- A label isn’t a bad thing, especially if that label gets you something you need. As a disabled person, people are going to label you. Using and choosing your own labels give you some power. (Various labels people have used towards me due to symptoms of my disability include lazy, selfish, air-headed, clumsy, weak, slow, difficult, awkward, weird, creepy, distracting, out of shape, dramatic, and worthless.) I much rather identify with my disability label than any of these.
- You should never turn down services that you qualify for due to shame. There is no need to be embarrassed. Do you need a parking pass? Get it. ADA seating at events? Book them. Qualify for a national park pass? Apply! Need a mobility device or other accommodation, even if it’s intermittently? Don’t let imposter syndrome or the belief that it makes you “less than” stop you.
- Having a child that is disabled has really encouraged me to confront my own internalized ableism. This is defined as the subtle oppression of disabled people by others. Abled people aren’t the only ones that have to deal with this because “anterolateral ableism” exists. This is something I’ll always be working on.
- Being disabled has helped me avoid a lot of the issues I’ve noticed other parents of disabled children have. Having a disabled child isn’t as scary. It’s not a negative thing. I’m more informed about the disability community already.
- I’ve learned that every year on March 1st it’s the Disability Day of Mourning. We remember those who are victims of filicide. The tragic event of when a parent murders a child with a disability. The fact that this day is needed hurts every fiber of my being
- I often encounter either adults who are disabled or parents of children who are disabled. It’s not often I find parents in a position like mine who is disabled and also have a child who is disabled. When I do, though, it’s a very special thing.
- One of the most important things I’ve learned is to listen to disabled voices more and parents of disabled children less. Disabled children grow up and become adults. Their opinion is valuable. If you’re a parent of a disabled child, I encourage you to listen to disabled adults more. They’re your child’s future.
Guest Contributor Alexie Herrmann
I’m a quirky person overall with a wide variety of interests. One of the most important things about me is that I’m a single mom to a fantastic son. I am neurodivergent.