Focus on People Not Labels

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A controversy rages about the definition of autism. The American Psychiatric Association is considering a redefinition of the term for the newest edition of their Diagnostic and Statistical Manual (DSM).

Government agencies and insurance companies look to the DSM to decide who will receive scarce resources and who will not. The New York Times cites an analysis that suggests that the proposed criteria would qualify only 76% of those currently diagnosed with classic autism, 24% of those currently diagnosed with Asperger's, and 16% of those currently diagnosed with PDD-NOS. That translates to tens of thousands of people who will be cut off from services they currently receive.

Should the definition of “autism” or any other disability matter for us who are involved in churches? Yes and no.

Definitions Matter

It’s a matter of justice. I don’t know what the best definition is for autism; however, I do know that just societies care for their weakest members. Our definitions of “disability” and of various disabilities such as autism determine whether people with disabilities will receive the help they need or will be left to fend for themselves in poverty.

Furthermore, many definitions of disability focus only on the individual’s impairments including, for example, those found in the Americans with Disabilities Act and in the Accessibility for Ontarians with Disabilities Act. However, such definitions direct the attention of society away from our own responsibilities toward people with disabilities.

In contrast, a social definition of disability recognizes that everyone participates in the disability of the people who are labeled “disabled.” One such social definition says that persons with disabilities “include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various attitudinal and environmental barriers, hinders their full and effective participation in society on an equal basis with others” (emphasis mine). This definition reminds us that we participate in the disablement of others by the barriers we create such as steps into buildings, inaccessible bathrooms, refusal to consider someone who is blind for employment, and so on.

Definitions Do Not Matter

However, a focus on definitions can get in the way of ministry. Let’s say that 10-year-old Blaine lives with a disability, and he and his family begin attending your church. The church education staff eagerly approach his parents to find out how they can best incorporate Blaine into Sunday School and other children's ministries. The first question parents are frequently asked in such a situation is this, “What’s his diagnosis?” But that question assumes that a child can be defined by his label: autitism, Down syndrome, Tourette’s, and so on.

A much better question to ask about anyone living with a disability is this, “What do we need to know about him so that we can include him in our church life and ministry?” It doesn’t matter what the DSM says about autism to learn how to include Blaine in your church’s Sunday School. It does matter what Blaine likes and dislikes, what calms him and what frustrates him, what he can and cannot tolerate, what his interests and hobbies are, and so on. Barbara Newman’s excellent book, Autism and Your Church, takes this approach. The book discusses autism briefly but focuses on how a church can best incorporate a child with disabilities into church life, whatever disabilities he lives with.

Although definitions do matter in some situations, for healthy ministry this basic rule of thumb is best: focus on people not labels.

 

Posted in: Disability Concerns; Blog Photo courtesy of Jay Wilson - http://www.flickr.com/photos/jayw/3498129584/in/photostream/ Image: See Credit

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These definitions are based on statistical  analysis (e.g. most people with this problem exhibit this symptom).  Most people are very poor at risk analysis. Many popular science writers have forgotton the basics of statistical analysis and probability.

1. Statistics only apply to specific groups and never to individuals.

2. Statistics only apply to historical data. A datum is not data.

3. Probability only applies to future events and never to past events.

4. What happened, happened. Stuff happens. That's all, folks.

This applies to Biblical prophecy as well as medical and physical data. <G>

Well said, Mark. I appreciate the distinctions you've drawn. A relational approach is always the appropriate starting point, even for churches that may have the benefit of specialized programs/experience with people with disabilities.

Recently I spoke with a parent whose 13-year-old son has struggled with sensory issues since birth, has been diagnosed with ADHD, and continues to be tested for other disabilities. When they were church shopping a few years ago, the parents felt "handled" when visiting a large-membership church that had trained volunteers and programs to respond to children with disabilities. Eventually, they joined a much smaller congregation that did not have such programs in place but did have people who got to know them first.

Terry, interesting story. It's ironic that the program this "large-membership church" created to enhance their ministry got in the way of ministry. I wonder how many people with disabilities and family members of people with disabilities were involved in developing this program for "handling" the visitors who have disabilities. Mark

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