Sermon Series:  On Disability
Reading & Sermon preached by Becky Noreen
June 8, 2008

Reading

Welcome to Holland!!
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But ... if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

Sermon

The reading you just heard referred to taking a trip and planning, but eventually giving in to the journey.  When we were first told of my son Russell’s diagnose of Autism, we were handed a paper that said “Welcome to Holland”.  It said that it was like we were planning a trip to Italy, buying guidebooks, learning Italian, planning where to visit.  Then all of a sudden, we found that the plane had landed in Holland instead.  Holland is a very nice place, but it’s not where we planned and dreamed of going.  So we buy new guidebooks, learn a different language.  It’s slower paced than Italy, less flashy.  But there are windmills, tulips and Rembrandts.  It’s lovely, but you still hear everyone bragging about Italy all the time.  Nevertheless if you spend your life mourning the fact you didn’t get to Italy, you may never be free to enjoy what is specifically lovely about Holland.

We have been a part of this church family for all of my 16 year- old son’s life.  He was dedicated here, went through Religious Education, and participated in Coming of Age.  Russell has high functioning autism spectrum disorder.  Although he would tell you he doesn’t have autism.  That’s partially because he’s done so well coping with everyday life.

Russell used to have problems with sensory input but now he is able to go through fire drills and sit in front of the trumpet section - he plays trombone in a jazz band -without ear plugs anymore.  He doesn’t have meltdowns anymore, and he carries on conversations on topics other than his own.  He still has problems with social nuances, but face it, don’t we all?  And sometimes he comes out with some real original statements!  In response to the question “How do we create community?” for the Coming of Agers, Russell said “Human relationship means that we’re all human, we’re not like aliens.  We all understand how we act the way we are.  We understand that sometimes people will be mean – we know how everyone might act.”

Everything isn’t a bed of roses; of course, it’s been a long hard struggle for our family and friends.  We’ve been particularly blessed with having exceptional caregivers and Russell still has some kinks to figure out, like writing papers (concepts are especially hard).  But as a whole, we are doing OK.

But in the beginning it was tough.  Really tough.  And I think that can apply to any disability, not just Autism.  How can anyone be prepared for a disability?  You need support, whether it’s a physical or mental disability.  You need help.

That help can come from us as individuals and from this congregation.  As Carolyn asked in her sermon on religious identity, “Are we going to act like typical humans here or something better?”  We believe we are all interconnected.  If one of us is in need, then let’s be better than a typical human and come to that person’s aide.  Take a chance for that feeling of interconnectedness.  

Here is an ending of a poem by Julia Kasdork that Carolyn has used several times in her sermons:

I learned to create
from another’s suffering my own usefulness, and once
you know how to do this, you can never refuse.

We are a religious community, as Jake Lefker says in his Coming of Age statement about Community:

Jake:  Community must be based on understanding.  It can be made up of people who share common cultures and beliefs but I also believe that it can consist of people with varying beliefs and ideas.  In that case it’s rooted in the understanding of tolerance and acceptance which is what holds it together.  Within a community there is a sense of a unifying force, one that can sustain changes and continue to keep the bond.  That force comes from each of the members – the sense that they belong somewhere … to that community.

Autistic individuals have original thoughts, ways of thinking we aren’t accustomed to.  But they can be a part of our community, and can belong.   

When this congregation was still in the church on Huntington Street, there was a family that came to the church I got to know who had a physically disabled daughter.  One day I was teaching in Russell’s class and we were short a teacher.  The toilet broke down in the preschool room, Russell was having a bad day, and I became overwhelmed.  When I went out to my car in the parking lot at the end of church, I found I left my lights on and my battery was dead.  I think I started crying.  The father of the disabled daughter came up to me and sang:

You’ve got to accentuate the positive
Eliminate the negative
Latch on to the affirmative
And don’t mess with Mister In-Between

That definitely lifted my spirits.  Then this man, who had greater challenges with his daughter than I had with my high-functioning son, asked “How can I help?”  Maybe he asked because he had wanted people to ask him the same, or maybe he asked because he knew that in dealing with disabilities, help is needed, but it was the first time I remember someone asking.    

All through these 16 years here at All Souls, what would have been my dream?

• There are four words that I would have liked to have heard more often from individual members of the congregation as well as institutionally, as a congregation:

“How can I help?”  “How can we help?”

Please don’t be scared to ask.  It can be very simple to help. 

For example, sometimes I needed to pay attention to Russell and would need someone to help with his younger sister, my daughter, Erika.
 
I could haveused help with the RE curriculum using visuals and interaction so Russell would understand.  Religious education curriculum that uses these supports is not only helpful for children or youth with special needs but also is helpful for “typical” children.

I needed people to engage in conversation with him.

Now there are people in our congregation who have helped.  For example, Andy Derr gave Russell a set of coconuts so he could ride a horse like one of his favorite movies, “Monty Python and the Holy Grail”.  (Demonstrate coconuts) Russell can do it a lot better than me.  Something as simple as giving coconuts to Russell was a cherished act. 

I see that here at All Soul’s we are on our way, we are closer to being a welcoming congregation for people with disabilities.  Here’s how …

• We are located in a more accessible building

Everything is on one level.  There are marked handicapped parking spaces.  We have spaces for children to “chill” such as the calming room and the youth room – the Emerson Room – which is a great space for youth.  Russell has practically taken residence on the couch.  There is a wheelchair available and a wheelchair cut out in the sanctuary with space reserved for a companion.  We have wheelchair accessible showers.  All Soul’s is the only place in the area where homeless people in wheelchairs can take a shower.

• We use the SpiritPlay curriculum

This is a religious education curriculum that uses consistency, structure, visuals, interaction, and free play.  When I learned about this at General Assembly I was ecstatic!
 

• We will be hiring a Religious Education aide who will have the specific responsibility to support children with mental, emotional, social and learning needs within the classroom setting.   This is an important service to the volunteer teachers who by and large don’t have experience in handling this wide range of needs.  Also, these children’s parents probably more than other parents, need that hour of respite and spiritual nurture. 

There will be people with disabilities in our congregation; it may even be you sometime.  Will we be fully prepared?  Will we be welcoming?  They will come.  Will they stay?

Russell’s last Coming of Age statement was in response to this question:
“What does being part of All Souls mean to me?”  He said:  “This Coming of Age means I’m hanging out with people of my age and I’m learning about their ideas.  I do like being out with people and seeing what they believe.  That’s what I like about this church.”

You can’t get any better than that.

In a few moments, we will all sing a hymn that is a wonderful song with beautiful lyrics.  It asks the question:
How could anyone ever tell you you were anything less than beautiful? 
That’s a great way to accentuate the positive!

Through our religious identity and community, may we feel interconnected with a sense of belonging.  And have the ability to reach out and extend that to everyone. 

I spoke about Holland in the story at the beginning of this talk.  Holland represented life caring for someone with a disability.  But Holland is still beautiful, and I invite you all to Holland.  Yes, there are things you can do in Holland.  I invite you all.

“Like Me"  By Emily Perl Kingsley 

I went to my dad and said to him,
There's a new kid who's come to my school.
He's different from me and he isn't too cool.
No, he's nothing at all like me, like me,
No, he's nothing at all like me.

He runs in a funnyish jerkyish way
And he never comes first in a race
Sometimes he forgets which way is first base,
And he's nothing at all like me, like me,
No, he's nothing at all like me.

He studies all day in a separate class
And they say that it's called "Special Ed."
And sometimes I don't understand what he's said,
And he's nothing at all like me, like me,
No, he's nothing at all like me. 

His face looks kind of different from mine,
And his talking is sometimes so slow
And it makes me feel funny and there's one thing I know;
He is nothing at all like me, like me,
No, he's nothing at all like me! 

And my father said, "Son, I want you to think
When you meet some one different and new
That he may seem a little bit strange, it's true,
But he's not very different from you, from you,
No, he's not very different from you," 

Well I guess, I admitted, I've looked at his face;
When he's left out of games, he feels bad.
And when other kids tease him, I can see he's so sad.
I guess that's not so different from me, from me,
No, that's not very different from me. 

And when we're in Music, he sure loves to sing,
And he sings just like me, right out loud.
When he gets his report card, I can tell he feels proud,
And that's not very different from me, from me,
No, that's not very different from me.
 
And I know in the lunchroom he has lots of fun;
He loves hot dogs and ice cream and fries.
And he hates to eat spinach and that's not a surprise,
'Cause that's not very different from me, from me,
No, that's not very different from me. 

And he's always so friendly, he always says hi,
And he waves and he calls out my name.
And he'd like to be friends and get into a game,
Which is not very different from me, from me,
No, I guess that's not different from me. 

And his folks really love him. I saw them at school,
I remember on Open School Night --
They were smiling and proud and they hugged him real tight,
And that's not very different from me, from me,
No, that's not very different from me. 

So I said to my dad, Hey, you know that new kid?
well, I've really been thinking a lot.
Some things are different . . . and some things are not . . .
But mostly he's really like me, like me,
Yes, my new friend's . . . a lot . . . like me.

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