Let’s Start at the Very Beginning

Recently I was asked some questions about special needs ministry. The questions were birthed from the sincere desire to provide excellent pastoral care but originated from a heart with very little knowlege and almost no relationships with people who have developmental disabilities.  I have been in relationship with people with developmental disabilitis since my childhood and a professional in the field for over 35 years.  I sometimes forget that assumptions, myths and old-school ideas may be all the information that a person or a faith community has for basing ministry with people with developmental concerns. Sometimes I incorrectly assume that the person I am in conversation with has more knowlege or experience than they actually have.

So, let us get back to the basics!

What is a developmental disability? The United States Center for Disease Control and Prevention defines developmental disabilities as: a group of conditions due to an impairment in physical, learning, language, or behavior areas; these conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime. In layperson’s terms a developmental disability begins in utero, at birth or in childhood; the disability may impair the body, learning needs, communication and/or behavior; the disability will likely be lifelong.

The term ‘developmental disability’ is a very broad term that includes people with cerebral palsy, Down syndrome, epilepsy, muscular dystrophy, many chromosomal aberrations and those who are diagnosed within the autism spectrum, and a myriad of others who have delays and disabilities of undiagnosed origin. The disability begins in childhood and remains throughout the person’s lifespan. For example, a child with Down syndrome will grow to be an adult with Down syndrome; she will never out grow her medical diagnosis. However, while she will always be a person with Down syndrome, she is first and foremost a person with gifts, talents, dreams, purpose, depth, relationships, knowledge and life experience that all combine to make her an amazing person.

Of interest to me regarding our on-going conversation about faith and disability is the knowledge that while disability impacts a person’s body and learning or thinking processes, it does not touch a person’s spirit! A person’s spirituality is their expression of their broader values and beliefs— “beliefs and practices that connect [them] with sacred and meaningful entities and emotions (1).” A person may have profound developmental disabilities and still be a perfectly whole and sound spiritual being!

In future blogs in this series we will explore spirituality, faith and disability with an eye for laying a firm foundation of the basics of understanding them.

(1) Alzheimer’s Association, Learning Institute, Rochester, NY

Fairytale or Real?

The story unfolds in such beauty that it seems like a fairy tale. Perhaps it is just a fairy tale, or perhaps it really is a true unfolding tale that will someday end with, “and they all lived happily ever after”.

Once upon a time a charming prince wanted to go somewhere to learn more about God and make friends. He visited a church with lots of smiling people. He enjoyed the lovely music and the opportunity to make new friends; but, alas, there was a problem. You see, the prince does not talk and when he is happy he likes to bounce in his wheelchair. His bouncing wheelchair makes noise. The music and the smiling people made him very happy so he bounced in his wheelchair to share his joy. Sadly, this was not a place where people bounce when they are happy and they did not like it when he bounced. The prince left and stayed at home and listened to joyful music by himself.

One day a kind maiden in the kingdom invited the prince to visit her church so he could learn about God, make friends and be free to bounce when he was happy. He went with the maiden, but he was unsure if he really would be welcomed. Would people shake his hand at the exchange of peace? Would people turn and shush him when he sang? Would he be asked to leave if he was happy and bounced? He was surprised to have a delightful time! The smiling people from the church helped him off his horse drawn carriage (a.k.a. a wheelchair accessible van), and held the doors open for him as if they already knew that he was royalty. The maiden proved herself to actually be his ambassador as she introduced him to her friends. The smiling people seemed genuinely happy that he was there, but would the smiles disappear if he started to bounce? He quickly learned that no, the smiles would not disappear and the shushes would not happen! He was free to be himself! The pastor even said during his sermon that he was happy to have the prince present!

Now, almost every week the prince goes to church. Friends from his church visit him at home and share their music and hearts with him. He has his own offering envelopes so that he can help make a difference; he sings as only he can sing, he prays, he listens, he bounces, and if he cannot be there on a Sunday morning than the people tell him that they missed him.

Is it too soon to write, “and they all lived happily ever after”?