Far from the Tree: Autism and Disability 2-2-14

During February, I am going to continue my sermon series based on the book Far from the Tree by Andrew Solomon. I wrote to him and told him about the series and he wrote back and asked that we link our web page to his, which I will do. I bought a copy of the book for our bishop Bishop Peggy Johnson, but yesterday she told me she is already reading it.
It’s starting to get a little harder – the issues we’re bringing up. We’ve talking about Deaf culture, Dwarves and Down Syndrome. I hope you’ll hang in there with me as we take on a few more difficult issues and identities. Jesus will help us as we use his Sermon on the Mount to think about the church in relation to all of these people, blessed by God.

Matthew 5:1-12 When Jesus saw the crowds, he went up on the mountainside, and after he sat down and the disciples had gathered around, Jesus began to teach them: “Blessed are those who are poor in spirit:  the kingdom of heaven is theirs. Blessed are those who are mourning:  they will be consoled. Blessed are those who are gentle:  they will inherit the land. Blessed are those who hunger and thirst for justice:  they will have their fill. Blessed are those who show mercy to others:  they will be shown mercy. Blessed are those whose hearts are clean:  they will see God. Blessed are those who work for peace:  they will be called children of God. Blessed are those who are persecuted because of their struggle for justice:  the kingdom of heaven is theirs. You are fortunate when others insult you and persecute you, and utter every kind of slander against you because of me. Be glad and rejoice, for your reward in heaven is great; they persecuted the prophets before you in the very same way.

February 2, 2014        

Far from the Tree: Autism and Disability

Last week I read to you a mother’s account of what it’s like to parent a child with Down Syndrome. It was called, “Welcome to Holland.” She suggested that parenting a child with Down Syndrome was just a different and unexpected journey which had its own joys and blessings.  One of the people Solomon interviewed with an autistic child said she was thinking about writing her story and calling it “Welcome to Beirut!”
You probably know or have heard of someone who’s family felt like a war zone because of the difficulty they had in raising a severely disabled child. I don’t know if she would compare her experience to a war zone, but my wife’s cousin Jean McCoubrey, who came here to present her architectural work for us, raised a son with severe and multiple disabilities.
Sam can’t walk, talk, or feed himself. I can’t help but be impressed by Jean and Dan’s love and care for him at their home for 20 plus years of his life.
Some people with autism can also be severely impaired. Though the young people with autism who have come through St. Luke have not had such severe difficulties, we have struggled at times in our Children’s Celebration program to think about how to best support children and their families with a variety of difficulties.
Autism is a kind of catch all term for people with pervasive disorder which often involves a absence of or delay in speech; poor non-verbal communication; repetitive movement, like flapping arms; minimal eye contact; and rigidity. Autistic people may engage in self-injurious behavior and have food rituals and severely limited diets.
Autism is increasing in our society, both because it is being recognized and diagnosed more frequently, but also it seems, whatever causes it is happening at an increasing rate. We don’t know what causes it. As with each of the identities we are discussing, there are folks who proclaim autism as an identity rather than an illness, naming their cause the promotion of ‘neuro-diversity.” Exhausted parents might feel insulted by the suggestion that the condition is not an adversity.
I interviewed Lauri Cumming this week about her experience with autism. She said that she felt really lonely raising her autistic child because no one seemed to understand how difficult it was to relate to her and since they didn’t have a name for the difficulties, she felt like she must be making up the problems.
She said she felt incompetent because she just didn’t know what to do about this child who would cry all the time and not be able to be alone with anyone else but her. She couldn’t figure out what she wanted or needed even when she was so upset that she was throwing up.
One of the hardest things was not knowing how to love her when she didn’t want to be hugged, kissed or caressed. She felt like her own daughter hated her, and finally just kept loving her the only way she knew how even though it meant making her uncomfortable. Fortunately, she came to love being hugged.
She felt trapped in being the only one who could be with her 24/7. I think she still wonders about what she did to cause the problems and how they could have helped her earlier. Because the symptoms were not as severe as with some children, there was a long time of being in limbo and not knowing that there really was something wrong. Finally having a name for it was a real relief because it gave her hope that she would actually get some help.

Jesus begins the Sermon on the Mount with what we know as the Beatitudes. These beautiful Jewish sayings, it seems to me, can be quite useful in thinking about people with autism and severe disabilities. Our society is so oriented toward success and competition that the Beatitudes essentially turn the values of our world upside down.
Blessed are those who are poor in spirit; the kingdom of heaven is theirs. Blessed are those who are gentle: they will inherit the land. We may think that the Beatitudes hold out such a contradiction to our usual way of thinking that they could only be carried out by the saintly people of our time or maybe by the disabled who we are thinking about today.
The truth is that the Beatitudes are for all of us. They call us to a different way of being in the world. We can learn from the needs and skills of the courageous people who live with and work with disabled people.
The Beatitudes challenge our cynicism that says “That’s just the way things are. You’ll get used to it. The Beatitudes challenge us to hopefulness – to have hope for the meek, the humble, the gentle, the hopeless. We place our hope in the Living God when we have given up on everything else.
The Beatitudes call us not to sympathy or pity, not to think of these families as super-heroes doing something that we could never do. Sympathy is useless and leads us to give advice as though we understand better than the people most involved with the situation. Sympathy is just a way of denying that we care for our children the best we can and we too would do the best we could whatever disability our children have.
Instead of sympathy or pity, the Beatitudes call us to compassion, to recognizing the humanity of all people. As Henri Nouwen wrote, “compassion grows with the inner recognition that your neighbor shares your humanity with you.This partnership cuts through all the walls that might have kept you separate.”
When we recognize that the most disabled among us are actually and certainly blessed by God; when we recognize and celebrate the families who work so hard to raise these children are just like us, blessed and loved by the living God, we honor God’s blessing of all of humanity, God’s blessing of us all.
As we come to receive God’s love in the bread and the cup this morning, may we take in this blessing that turns all our values on their head. May we eat and drink with the one who exemplified the courage to love and suffer, and live for peace and justice for all God’s people. May this meal nourish us to support and love all who come to this community seeking God’s compassion.
As we sing this beautiful song of the Beatitudes, let’s first give of ourselves in this morning’s offering. Will the ushers come forward to serve us who are blessed by God and called to be a blessing.

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