I am learning to refer to Kiran as disabled.
Whenever I am able, I listen to disabled adults who are willing to share their experiences. Overwhelmingly, I hear that they want to be referred to as disabled – not differently-abled or special needs or handi-capable – their perspective, as people living with disability, is that these terms are to make able-bodied people, like myself, more comfortable.
Disability is not a bad word.
I listened to a TikTok the other day that is still bouncing around in my brain. A disabled content creator who I have learned a lot from was talking about how able-bodied people seem to always see disability – any disability – as a loss, as something to be grieved. And it doesn’t have to be, and in fact, isn’t always. In this instance, she was referring to the absolute joy a deaf/hard of hearing family experienced when their second child was also born with a hearing impairment. So many people didn’t understand why, even though the family shared explicitly it was because they would be able to have a shared culture and life experience.
But – at Kiran’s parent-teacher conference yesterday when we were talking about his writing goal, his amazing special education teacher made the comment that she sought guidance from another educator/consultant who has experience with people with significant disabilities.
I’m not going to lie. “Significant disabilities” was a punch to the gut. It hurt my heart.
It’s an accurate description of Kiran. It isn’t all of who he is, but he is a child with significant disabilities. It doesn’t change or negate anything else about him. But my internalized ableism is a work-in-progress, so I still have these reactions sometimes.
And I think that’s okay. Or – at the very least – it’s honest. I am learning. And I am practicing. Until Kiran is able to advocate for himself, I want to be the best advocate I can be for him, and that requires learning all I can from those who live with disabilities. I may be in close proximity to it as Kiran’s mom, but there is so much I don’t know, not having the lived experience.