The Lie That Creates Guilt for Parents of Kids With Disabilities

I am the mom of an extraordinary young lady who has spina bifida and uses a wheelchair. I am in tons of disability-related parent groups and I read or hear over and over again, “I feel so guilty. What did I do wrong to cause this?” I even thought this myself before meeting my incredible friend group of identity-proud adults with disabilities here in Washington. This group of people became my dear friends and teachers about how to support my girl well. I am so grateful for their wisdom and lived experiences.

As I was watching a highly recommended Ted Talk by disability advocate Stella Young about how she and other disabled people are not here for our inspiration, I had a guilt-relieving, humanity-restoring revelation as a mom. Here is a new thought: Maybe disability is a totally naturally occurring development in some babies, and it’s not a bad thing, just a different thing. I was believing a lie and recognizing that changed everything.

Everything we feel as parents of kids with disabilities is normal: acceptance, anger, grief, pride, fear, guilt, all of it. I grieve about my expectations of how I thought things would be and I get angry about the many unnecessary barriers that exist in the world for my daughter. I feel guilty for the cool equipment and accessibility stuff that is out of our reach because of cost. But I should not feel guilty about her disability.

I had to consider — perhaps my guilt was grounded in untrue thoughts and bias — because if a disability is not a bad thing, then it is also no one’s fault. I know it’s not tragic because nothing about my daughter is tragic or pitiable. She is awesome, so why do we get so many “I’m so sorry,” “that’s too bad,” “poor thing, and “you’re so brave” kind of comments from the people around us?

The world is full of ableist ideas and structures. I see and hear evidence of this all around me, and they whisper the lie that disability is, as Stella put it, “A Bad Thing, capital B capital T.” I can’t control what the world thinks or does (as much as I wish I could). What I can control is what I choose to believe about disability. It is not a bad thing, it is part of being human. My beautiful girl will have challenges, triumph, love and heartbreak just like all humans do. She will succeed, fail, learn, grow old, and be whatever she chooses to be in the world.

To my fellow parents, your child is a part of you and that is beautiful. Our kids are great just as they are, and everything we do or don’t do medically and therapeutically can support them to use the body and mind they have to the best of their capacity. You can choose not to buy into the ideas that we need to fix, change, or make them different than they are. Instead, we can accept, teach, validate, celebrate and support them along the way.

Walk or roll (or both), our kids are beautiful and resilient people. So if you are new, let me be the first to say congratulations on your beautiful child and welcome to the disability community. The people here are great. Lean into the community of others on the same kind of journey to find your people and help your child to do the same. You have nothing to feel guilty about and you are not alone.

Thank you to my daughter who teaches me every day, and to the adult disability activists in my community for being wise teachers and friends.