Slaying inclusion dragons may not always be worth the fight

It has been a week that I had allowed myself to believe couldn’t happen. My son Kyle may have multiple intellectual, developmental and medical disabilities, but I believed he was welcome, even loved, by just about everyone he meets. That people are basically good and would either welcome my son or stay quiet and at a distance if they did not.

This week, the rooster crowed three times. And I am reminded that people with disabilities are welcomed by some but not all. That some adults’ comfort with people with disabilities ends where the invisible line that marks entry to their world begins. That inclusion is best but not easy. And that parents’ advocacy for their child to be included must not supersede their child’s right to make their own choices and pursue their own happiness. Most of all, I’m reminded what some Olympic divers mentioned last week: that my son’s identity is not in others’ attitudes, not in his activities, but in Christ. And that even if others don’t recognize that, it is my solemn duty as his mother not only to remember but to honor it. Anyone who can’t see that Kyle is fearfully and wonderfully made does not require the repeated donations of our time, our son’s happiness, my efforts or my tears.

On Monday, our nurse felt a photography assistant at band pictures was actively trying to exclude our son and made fun of the fact that he is the band’s manager. This individual vehemently denies this. I have made my displeasure known to the photo studio, the band and the school administration. In the end, Kyle has been mostly supported, and I have negotiated a free glamour shots photo session and pictures for all the students in special education in his high school. It was painful but there was no easy solution, and by the end of the week, I was ready to make some good out of it and let it go. Then, on Thursday, I took Kyle to band practice and tried to find things for him to help with. As the director told the band booster that he needed 12-14 parents, and as I volunteered that Kyle and I could help, the parents proceeded to round up other parents from various locations and left Kyle and I standing, alone, without a word. Taking a deep breath, I took solace in the information that Kyle could help pass out water to band members at the football games and at contests. Friday night, at the football game, I approached the band area just before halftime with Kyle, and told the band mom in charge that the booster officer told me he could help with water. She said volunteers had to have background checks. I said I’d had an extensive background check and am an approved volunteer, and Kyle is a student. She said young students can’t help with the water because the kids are in their uniforms and we can’t risk spills (of water). I said Kyle isn’t a young student, he’s 16, and that I would be with him. She said she was told no one could help. I said I was told to bring Kyle to help. She said she was sorry, but she just didn’t know who to ask. I looked at her long and hard, turned and walked away with Kyle. I walked away before I yelled, or cried, or did something else inappropriate.

Kyle’s involvement in marching band seemed like a good idea. His brothers had been in Ben Davis Marching Band. Kyle hung out with me while I volunteered with the band sometimes. He loves music. There are lots of things to do for marching band, and he could be a helper. I wasn’t asking much. The director said okay. The band booster president was supportive. The kids were always just fine. But in the end, there was never anything for Kyle to do. There were never any ideas about how to actually include him. Every idea that came up just didn’t work out – or wasn’t tried. Kyle liked the idea of being with the band at first, but spent summer band camp and band classes mostly sitting, watching, and bored. By the time I actually asked him last night if he still wanted to be in band, he said no. I’m not surprised. Like any human being, he wants to feel like an important part of the groups he belongs to. He doesn’t want to be tolerated, he wants to be accepted. And, as it turns out, his presence in band was absolutely, and mostly kindly, tolerated. But his participation was not accepted. I could keep trying, but he doesn’t want it. I can’t say that I blame him.

Inclusion is worth fighting for. But it’s a means, not an end. A means to a good life, to belonging, to happiness. When the efforts for inclusion are making the child unhappy, and the resistance to inclusion is making the parent angry and hurt, and the program involved in the inclusion can’t find a way forward, then it may be time to give up the fight. I don’t like to give up a fight, particularly when the fight is for justice and acceptance, but more than that, I don’t like to make my child unhappy to prove a point. So, I’m done. No more band. Kyle can skip band class and stay in the life skills class that he clearly loves. We’ll continue to look for extracurricular activities in the school and community – and that search will begin again next week. He already has a number of community and family activities he loves. Not all dragons must be slayed. Nevertheless, I’m sad. Sad that dragons still run wild where I had thought, and sincerely hoped, that they could be tamed by the unassuming smile and open-hearted love of my boy.