Speak Easy

Before I became a mom, I shied from confrontation. Served a bad meal in a restaurant? I'd eat it (or try to) anyway. Retail clerk snarky? I'd assume they were just having a bad day. I can think of dozens of examples of looking the other way, making excuses, or just plain dealing with unpleasant situations that could probably easily have been amended had I just spoken up. I was just too chicken.

This attitude changed rather abruptly the first time someone mistreated my daughter in front of me. At that moment, the momma bear that clawed her way outta my chest shocked me more than the surly subject of my angst. I learned to anticipate the momma bear and mitigate the reaction more judiciously over time... until I had my son and became a special needs mom. Suddenly, I found that I was no longer a momma bear -- I'm a momma saber-toothed tiger. I also discovered that my hackles raise not only when I feel my son has been mistreated, but when I see ANY special needs person being dealt with unfairly. Although it is often uncomfortable, and I wonder how many times I cross the line between advocate and pain-in-the-ass (if there is a line.. they might actually be one in the same thing) doing nothing is no longer something I am okay with.

So last year, when I attended the huge public fundraiser for the organization we go through for a lot of Simon's therapy and medical appointments, I was pretty upset (okay, shocked) to see that there were no (NO) accommodations made for people with special needs. Families with people in wheelchairs and special needs strollers could not fit in the eating area because the tables were too closely packed together. The craft projects and games were far too involved for kids with fine motor challenges and there were no easier options or adaptations offered. The crowds and activity were too intense for kids with sensory issues and there was nowhere to take break from it. Most heartbreaking of all, none of the rides were accessible and I saw special needs kids observing the fun from afar, unable to take part in an event that was supposed to be about them. In fact, nowhere was it apparent what the fundraiser was really about or who it was for. The fact that the organization served people with disabilities was almost completely buried. I left the event feeling very sad and just a little bit angry.

On facebook the next day the organization asked people for feedback on the event. Though I hesitated, and I think I probably re-wrote my comment about fourteen times, I left a message saying that; though I appreciated the fundraiser, I was sad to see that the people they serve were left out of the planning. My comment prompted a request to take the conversation "off-line" (uh oh) and so I sent them an email outlining the things I had seen that were a problem and made what I thought were pragmatic suggestions about how they could be addressed next year.

It simultaneously felt good and bad to write that email. On the one hand, I knew I knew what I was talking about. On the other, the last thing I wanted was to piss someone off at an organization I frequently went to for help. In fact, after I didn't hear back for a few months I was pretty sure I had offended someone. I was hoping my name wasn't highlighted on some "parents to watch out for" list... (I am sure there is a list somewhere!).

However, about six months after I wrote the email I met someone from the events department at my old high school's career day. We had both been asked to come present to the students and while we were waiting we got to talking and I learned that my email had been reprinted and posted for everyone associated with the event to read. It had inspired brainstorming sessions internally, and my suggestions were being turned into action items. Not only had they not blacklisted me, they actually appreciated the fact that I wasn't just an "angry parent," I was a constructive critic trying to help make things better.

We just got back from this year's event and I was pretty thrilled to see that EVERY SINGLE idea I had presented was utilized, plus some. In the eating area, the tables were spread further apart and there was space reserved for people with disabilities. There was a wider range of craft projects and activities. There was a "quiet corral" with dim lights, quiet activities and bean bags for kids who needed to take a break before having a melt-down and needing to leave. Everywhere posters were present spreading awareness about living with disabilities and inviting attendees to get involved by simply texting a donation. Best of all, the carousel was wheelchair accessible. Seeing a kid in a chair RIDE this year instead of being left behind was maybe the best holiday present I could get.

One day, I would like to see this event become 100% accessible, and the organization become the model of inclusion that I know that they can be. I plan to help them get there any way I can. In the meantime, I've learned a pretty awesome lesson. Saber-toothed tigers can change the world for the better, one constructive critique at a time, one creative partnership at a time.... one carousel ride for one special needs child at a time.

Happy Holidays!