Why inclusive play matters in my family

Ask Aimee is a new advice column on navigating life as a parent with a disabled child.

Why inclusive play matters in my family

Dear Aimee Abled-Mom of Disabled-Kid,

I have a disabled kid and a typically developing, able-bodied kid. I work and they’re both in school and like everyone else, we have a million things going on. Doing things with both of them slows us all down so much and tensions get high. Either one kid or the other gets mad, and I feel split in two. What do I do? I love both of my kids equally of course but it’s so much easier if I just go with one or the other. My disabled kid usually wants to stay home anyway, is it okay if I leave her with a babysitter?

Help!

Split Apart

Dear Split,

I can relate to so much of this, sweetie. Today it was eighteen degrees in our New England town and when I went for a quick walk to get some air, I noticed that the pond near our house was frozen. I sent a picture to my older daughter because last year we walked on it together and she’s been waiting and waiting for it to freeze over ever since. When I got home, I told her we’d walk over together, and then I asked her sister and her PCA (personal care assistant) if they’d like to come too.

While I love to have mama-daughter time with each of my girls separately, both planned and spontaneous, and both at home and out and about, we are also a family, and it’s important for us to be able to do things together, too. I’ll be honest. It’s almost always easier to do things with just one kid or the other. If I’d gone to the pond today with just my able-bodied daughter, we’d have been able to walk to the pond and back in a half-hour. And yet, my younger daughter is a part of the family and it’s nice for me to be able to go for a walk with both of my kiddos. Just because it’s easier to go without her isn’t a reason to do so.

We invited her and she wanted to come so we had to find a way to make it happen. We were lucky that she had a PCA there that day because without her it would have been twice as tough because she didn’t want to take her wheelchair. We walked, and when she didn’t want to walk anymore, she rode on top of her walker while we pushed that. It was cold and it was getting dark and it was difficult. There were tears and cranky children and I ended up carrying a nine-year-old part of the way and our PCA ended up carrying her another part of the way, but the beautiful sunset over the frozen pond was breathtaking and worth it for all four of us.

Read more: Family: together in sickness and in health

Tonight, I talked to my eleven-year-old about my decision to go as a group. For a long time now, we have been talking about privilege, and more recently about the terrorism of the previous administration, including the siege on the Capitol building. I asked her what she knew about oppression and about who designed society and who it was intended to benefit. I asked her a series of questions that led her to come up with the idea on her own that it’s the world that made it difficult for us to go to the pond as a family, not her sister.

If the world were more accessible, it would be easier because the streets would be better lit and the sidewalks would be more smoothly paved and wider. The road down to the pond where we had to carry a nine-year-old would not be sandy. It would be paved, or it would have a ramp that the wheels of a walker or a wheelchair would not have gotten stuck in.

If the world were more inclusive, my able-bodied daughter would be able to just be a regular big sister and argue with her sister and be mean to her sister like all big siblings do and are sometimes. She’s a generally pretty supportive sibling just because she’s a generally pretty supportive human being, not because she’s a disability advocate. I think it’s a lot to ask of an eleven-year-old to be an outspoken disability advocate especially when she’s being taught by an imperfect ally like me, but I ask it of her all the same. I said so tonight, because, as I said to her if she looks around her, everything and everyone is built to help able-bodied and neurotypical people thrive, not Freyja. She thought about it for a minute, and she realized we were right. That’s why it’s so hard. Not because Freyja makes it hard. The world does.

She seemed to truly grasp that for a moment, and in that moment I asked her to think about all the people out there with disabilities who had sisters and parents and families who just left them at home instead of asking them to come along to see the sunset when the pond was frozen over in their town, and how sad that was for them, and how even though this might not be easy for her, we are helping to make things easier for so many other people with disabilities and their families in the future.

I know we will have this conversation a million more times, and probably a million more times people will have to have this conversation with me, too but for that moment today, it felt like we were a real family, all on the same side, all advocating for the same thing, all trying to make the world an easier place for the families to come. In that sense, asking for trouble was well worth it.

Love,

Aimee