Susan's Blog

Tuesday, January 19, 2016

Exclusion and Inclusion

It was the best of days, it was the worst of days.

An unexpected “no” to Nat came last week from Jewish Big Brother Big Sister. He had been deemed inappropriate for their friend-to-friend program. I didn’t know what to make of it at first. All I was capable of for that day was a choking rage and Facebook posts in all caps.

We’d gone to the interview a month or two ago — Nat, Ned and I — feeling like it was just a formality. My feeling is, to meet Nat is to love him. He has a sudden surprising all-out smile, and his lids draw down, and he loses himself in his own joy. There’s a brief, lucky moment when his Caribbean eyes meet yours, and let you in on it. And at this particular intake interview, Nat was really on top of his game — at his most compelling. He was so attentive, so obviously trying to follow the conversation. So happy. We had told him that we were talking to this woman because she ran a new social group. Nat loves social groups, he loves going out with people, anywhere, everywhere.

I was pleased with the way the caseworker interviewing him addressed her questions to Nat, not to us. Then Ned or I could support Nat’s answers, reframe the question for him, or whatever he might need to answer. This kind of conversation is a challenge for Nat because there are no parameters, and he really feels the most comfortable with familiar topics and clear choices for answers. Still, he was able to pull words out of air and answer sometimes. We filled in what he could not.

I was so proud of him during the intake that I’m sure my cheeks were red and hot. Afterwords, I was giddy like a girl. The caseworker was so friendly and seemed to say that of course this would work, that they have clients with all sorts of disabilities.

But I had it wrong. Her letter read: “I’m sorry to have to deliver disappointing news.  Numerous factors are taken into consideration as we review each individual’s eligibility.  Our main concerns are related to Nat’s safety in public and his limited communication/conversational skills.  The volunteers we engage are not expected to have, and most often don’t have, any experience working with people with disabilities.  We believe to accept Nat would be unfair as it is highly unlikely we could find a right match and would therefore create a frustrating experience for both him and you.

One friend offered to file a complaint — she’s a dynamo attorney. I didn’t want to go that route, at least, not right then. I wanted to understand the issue and figure out if they were at all right to turn Nat away. I was trying to be fair. But the way my hands were shaking and my throat felt like yelling, I think I already knew that they were wrong. You can’t call yourself an organization whose mission is “We introduce adults with disabilities to new friends in their communities.”

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

– See more at: http://www.jbbbs.org/about/mission-2#sthash.GGnKnBtl.dpufv

And then you tell someone that he is, basically, too disabled for them. They don’t have any experience working with people with disabilities, she said. Really? No volunteers there can be taught how to communicate with Nat, how to connect with him and go for walks, movies, out to dinner…? No volunteers there have loved ones or friends with communication limitations? So what, exactly, does the disability part of their mission mean?

Was this even a legal response? Not if this group takes public funds. The ADA is clear on that.

The very next day, I got an email from Nat’s music teacher — he’s recently joined a group that practices together as a band but still has a lot of one-on-one instruction. Elaine, the teacher, talked about how the group was growing and soon we would need to divide into two bands. Immediately I went into defensive mode, because of what has just happened with Jewish Big Brother Big Sister. I cried to Ned, to my mom, and to my laptop, that I just knew that the decision to divide the groups was code for “put Nat in a less advanced group, he’s slowing everyone down.”

I talked to my mom, who was adamant that I not let this be, that I make sure the teacher knew how I felt about this kind of thing.

I am so damned tired of the way people rank other people, and find ways to close off their little groups.

I must also point out that I did not know if Nat himself would mind such a grouping. I did not think he would understand this kind of winnowing out, or if he basically just wanted to hang out with these guys, doing whatever.

I sent Elaine an email, asking politely if she was dividing the group by ability and planning on putting Nat in a slower group. I told her that I hoped not, because he’d had a lifetime of this.

Elaine wrote back quickly: Thanks for emailing me about this. Nat is doing fantastic in the group, and is our one and only student drummer right now! He has actually improved on the drums so much that we were all talking about his progress last night after group ended. He spoke up while we were picking out which song to play next, and requested we play Build Me Up Buttercup. He seems much more comfortable now that he has attended for several weeks.

Nat is a drummer! I could barely hold on to my heart, floating away like a big red balloon.

That is how it should be.

Folks, we all march to our own drummer. Nat is no exception. I’d advise Jewish Big Brother Big Sister to get with the beat – or beat it.

 

 

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities. – See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

– See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

– See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

– See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

– See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities.

In this way, and in the spirit of chazak v’nithazaik (strengthening one another), we seek to support and empower individuals and families to engage, to participate actively in the life of their communities, to live inspired and to inspire others that none may be lost to us.

– See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

At JBBBS, we help to connect children in need to adult mentors, and we introduce adults who have disabilities to new friends in their communities. – See more at: http://www.jbbbs.org/about/mission-2#sthash.R7c9kuPC.dpuf

2 comments

Although they’d never admit I have no doubt they feel it’s a liability issue which is sad and unfortunate that people view our kids this way. Sometimes people out there are simply ignorant and just have no desire to put in the effort. Nat is better off not being with people who have this attitude.

— added by another parent on Tuesday, January 19, 2016 at 3:14 pm

Hmmm, Build Me Up Buttercup would be a great theme song for this blog post!

— added by DeeDee on Tuesday, January 19, 2016 at 3:30 pm

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