Something very typical happened at the park today. Elliott was hanging off one of the ladders on the jungle gym, and Reese was doing his army crawl across the pavement, chasing a toy car he kept pushing ahead of him. As I walked away from Reese to help Elliott, I turned back to see a couple approaching with a little boy. They stopped when they noticed Reese on the ground. The father kneeled down to make sure Reese was okay. When they made eye contact with me I nodded with a big smile and said, “He’s okay. He has cerebral palsy. He can’t walk.”
The father asked me if Reese is able to play on the playground. I explained that he can if I help him, and he loves the swings, but that he’s also happy to be on the ground with his cars. The father looked really concerned and said, “But he’s okay?” I said, “Yeah, he’s okay.” Then he seemed thoughtful and asked, “It’s my son’s birthday today. Can I put your son in the swing to play with my son?” It took me a second to digest the offer. This was obviously a safe situation, but it was so personal. I told the father that Reese would love to swing with his son. Then the man very casually picked Reese up and put him in the swing. Together, the mother pushed their son, the father pushed Reese, and I pushed Elliott. The father sang the alphabet to Reese, and Elliott joined in. Then we sang Happy Birthday to their son, Angel.
As this was happening, I wanted to lean into the sweetness of the moment, but couldn’t get past my discomfort. I didn’t want to feel beholden to these people and something about this was brewing a sadness inside me. On our drive home, it started coming to me. Reese, Elliott and I were having an unusually peaceful visit to the park. So often, Reese relies on me for entertainment, but today, he’d decided to venture out on his own, asking me for “ground”. Elliott was not running out of bounds as he likes to do. He was staying within a good range. Which meant that for a moment, I was sitting peacefully, watching my boys play, and feeling unusually normal.
Even though Reese was obviously very happy as he played with his car, this couple thought it looked different and sad, and thought we needed their help. And now, we had all been corralled to the swings, where we’d already been at the beginning of our visit.
It just didn’t feel like any of this was happening for our benefit.
When Reese was younger, his disability was less visible. He drew less attention when I put him on the ground to crawl. Now, when I take the boys out in public, I often find myself in conversation with someone who wants to know why Reese isn’t walking. My feelings are very mixed about this. I think many people are trying to be supportive when they ask me questions, and that’s good. I want to talk about Reese and Cerebral Palsy because it shouldn’t be taboo, and because it raises awareness.
I don’t expect people to know how to have that conversation. I don’t think I get offended easily. Someone can say something like, “What’s wrong with him?” and I don’t get angry. People just don’t have that experience very often and so they don’t have a built in vocabulary for talking about it. That’s part of why I try to be open with people. To give that person at least one point of contact with disability.
What I find repellent, is when I feel that I’m being leaned on. When there’s a feeling of being used by the other person, either to make them feel less sad, less uncomfortable, or less curious. When a person starts asking me for every detail, but has nothing to say back to me; I wonder if they realize that I’m not Google search- I’m the fucking mother. And it means something every time I speak about my son.
It would just take a moment of consideration to examine the purpose in engaging someone about their otherness. Sometimes I see someone in a wheelchair, and I want to talk to them about Reese. But then I think about it for a second, and realize that the moment is inappropriate, and that they didn’t ask to be singled out for a conversation because they’re in a chair. It just takes that much thoughtfulness to show respect.
I want to be vulnerable and generous of spirit with people; as long as it’s received with care. I want to accept the help of strangers, so long as we’re not being fixed.
I don’t expect people to know what they don’t know. So, I think it would be good for me to start setting some boundaries and preparing myself to enforce them.
Are there any parents of children with disabilities who have had similar experiences and frustrations? Have you found a solid way to approach conversations with strangers? Have you ever just totally leveled someone who approached you wrong?