Thursday, June 04, 2015


Photo Description: A crying mask.
Sometimes I don't understand an interaction until days after it happens. Sometimes I think of the right thing to say weeks after I need to have said it. Sometimes I wish I understood my life, and had the words to say, while it's happening and when I need it. Such was the situation that arose a while back.

Someone I know, and at request I'm keeping this vague, wants to come to Joe's and my wedding on Saturday. This person sent a support worker to talk to me. It turns out, as I was told, that this person was too anxious about my response to do this personally. The support worker conveyed to me a concern about a possible trigger for extreme anxiety and a resultant possible outburst during the ceremony. I was asked if we could make a small adaption that would ensure that this trigger was no longer a concern.

Let me step away from the story for a second. The 'small adaption' really wasn't all that small. Joe and I had tussled, not with each other but with the ceremony, and had already had the whole thing planned and organized. The request would require an entire revision of the flow of the service. Considering all this, I said, "Of course, we'll make the adaption. Of course we want them to be there." I tell you this part because we can't act as if all requests for adaptations are easy, or are without some adjustments in the heart and minds of others.

We heard back, only hours later, that this person was 'over the moon' about being able to come and 'cried in gratitude' when they heard that we would make the adjustment. That's not a phrase, this person actually cried when it was realized that welcome had been extended. "They will never be able to thank you enough," said the support worker.

I, of course, was moved.

Joe, of course, was moved.

But then I was having a conversation with Ruti Regan, a Rabbinical student with a developmental disability, and she said something that just jumped out at me, "treating someone as a human being, in itself, gives us way more power than we should ever have."

I'm afraid I stumbled in the conversation as the force of that statement hit me. People with intellectual disabilities are so often subject to subhuman treatment that simply being treated as a valued person, a wanted person, a welcome person, is such a shock that their gratitude is out of proportion to the simplest of actions. Hell, forget intellectual disabilities, I find that when I'm simply treated as a real, live, human being with thoughts and feelings and sensibilities I automatically imagine them to be people of great and wondrous character, almost magical beings. And they may be great and wondrous, but that isn't because they were, in this one instance, kind. I react out of proportion to the gift that's given.

What we did, the decision that we made, to make the adaption to our ceremony took some work and required us to go over ground we'd gone over a thousand times. But, this act of inclusion, was simply an act of inclusion, it shouldn't be surprising, it shouldn't be unexpected ... the asking of it shouldn't be done with anticipation of rejection and so fearful that an emissary needed to be sent to make the request. This person, who I thought would know that we would want them there, expected nothing from us because nothing is what is typically given.

I want their tears uncried.

I want their gratitude turned into a simple 'thanks.'

I want them to expect of me, and of the world, welcome.


Anonymous said...

You are right. This world has to change. But it can only be done by people seeing the problem, willing to take the effort to change and all the while educating others.

Thats what you do with your blog (with you being you) every day.

Some people carry this kind of willingness with them.

Thank you

Mary said...

I do see your point.

I feel I should remind you, however, that your lifetime's work is part of what made it possible for this person to talk to someone about their wish to go to your wedding, and to constructively identify the adjustment that would enable them to go. Also to identify that although they did not have the confidence to ask directly, they could ask their support worker to support them by asking on their behalf.

Your lifetime's work is part of what ensured that neither the person NOR the support worker would completely automatically just assume that they would be barred and that there was no point in asking at all.

Yes, it was hard for them to ask, harder than it should have been, and I agree there is a way to go. But a way has been travelled already, too. It's a journey in progress, not one which is yet to be embarked upon.

Liz said...

^^^ Can I just "ditto" Mary? I had some stuff to say, but I like hers better. Also, you (and your friend R) are very insightful and wise. Thanks for bringing those of us out here up short, and allowing us (well, me...I shouldn't speak for anyone else) pause and time to check my own stuff.

Anonymous said...

Glad you were ABLE to make the accommodation that will allow your friend to attend your wedding - it isn't always possible.

Weddings are stressful - big productions that have to come together at the right time. Laugh at that, take it calmly as the blips come, and enjoy that you are in control and could make this happen.

I so wish I could see! YOu wouldn't consider a remote internet feed, would you? The whole idea makes me smile.


Dave Hingsburger said...

Alicia, I've just posted information about the webcasting of the wedding! Join us.

Colleen said...

Ruti's comment brought me up short, as Liz says, - a whole new lens to look through.

Ruti said...

Why're people trying to reassure Dave? He doesn't sound upset to me.