by Rev. Phil Rogers
In our deinstitutionalized society, we find that more and more people with disabilities are taking active roles in our communities, including teens in both school and church settings. In the midst of trying to figure out who we are and why we exist as teenagers, having a disability can add to the confusion we already experience. Youth workers have a critical opportunity to speak into the lives of teenagers who have disabilities. We have the unique role of directing and encouraging teenagers with disabilities toward Christ and showing them where Christ is actively engaged in their lives.
John Nixdor begins his article, “Ministering to Teenagers with Disabilities: Part 1,” by stating that “The subject [of ministering to students with physical and/or mental disabilities] is huge, and this author is significantly ignorant. Undoubtedly, there are many people more qualified to write on this subject at large, and people who can write in specific detail on individual disabilities; hopefully they will. This is merely an attempt to get the dialogue started and to give youth ministers at least something to work with in the meanwhile.” While I disagree with some of what Nixdor claims in his article, I highly respect his desire to bring about awareness and change for other youth workers. Nixdor offers insights on disabilities and how that pertains to ministering to people with disabilities. I think that a more appropriate title for his article would be “Ministering to Teenagers with (and without) Disabilities,” leaving room for the idea that you aren’t ministering solely to teenagers with disabilities. Rather, you are ministering to all youth and recognizing that each of us has different skills and gifts to offer to the group. You are helping the youth with a disability to recognize his or her own gifts and talents as much as you are helping others to recognize the gifts and talents in other members of the group.
As a person who has a disability and who has studied many different diagnoses which are often disabling in nature, I offer my thoughts on ministering to teenagers with disabilities.
(Pictured below: Author Phil (seated) with his roommates Derek, Neal, and Dwight. Neal is a 2014 graduate of the Center for Youth Ministry Training; the other three are current CYMT graduate residents.)
First, and most importantly, when you have met a teenager with a disability, you have met ONE teen with a disability. Don’t make sweeping assumptions about a person based on the diagnosis that they have been given. For instance, a person who is diagnosed as legally blind may be able to see certain things (or he may not). A person who uses a wheelchair may be able to walk short distances (or she may not). Make note of the common characteristics associated with a particular diagnosis and then explore those things with the teenager and his or her family.
Speaking of family, parents and grandparents (along with caregivers) are often one of your greatest sources of information. These people have given so much of their time and effort to the teenager who has a disability. They know the teenager better than any other person. They can help you to understand how the teenager learns best, what makes him happy, what makes her upset, what food he likes/dislikes, what sort of assistance–physical or otherwise–he needs in navigating his community, and the gifts and talents that God has given to her. Yes, even a teenager who uses a wheelchair, is non-verbal, and is not able to read or write has gifts and talents given by God!
Keep in mind that the adults who most regularly invest in the lives of the teenagers with disabilities care deeply about the student. Like most parents, they generally want the absolute best care that they can get for their child. Given some of the hardships that they may have gone through, it is understandable that parents may struggle to let their teen child have independence in youth group. Encourage the parents that you are there to offer the best support possible but understand that it is not always easy to let go of your child, trusting that others will take good care of him. Some parents will want to stick around and help their child during youth group activities. This should be welcomed by you, particularly in the beginning while you are learning the best ways to care for the teenager who has a disability.
Beyond relying on the parents for this information, getting to know the teenager is imperative. Use the teenager as your primary source of information–whether through conversation or through observation–and then the parents, grandparents, and caregivers as a secondary source of information. Something that is true for one teenager with a disability isn’t always true for the next, nor is it always true for their entire lives. Seek opportunities to celebrate personal growth and maturity with ALL of your teenagers.
Our society has gone “label-crazy” when giving a diagnosis to someone exhibiting a set of symptoms. While a diagnosis can prove extremely helpful in treatment of a person with a disability, it is important that we remember that people are people first. Teenagers, whether typically developing or having a disability, are deep in the trenches of developing and discovering their personal identities. It is important that in the midst of this confusion that we as youth workers do not hinder the efforts of our teenagers with disabilities by labeling them as less than human. Instead, guide the teen in discovering how his or her gifts and talents fit within the rest of the Body of Christ.
“Person-First” language is the concept of ensuring an emphasis on the humanity of a person before attaching a label to them.
-Billy uses a wheelchair to navigate his community.
-Serena has a visual impairment and uses a cane to get from place to place.
-Jessica has cerebral palsy.
-Philip is on the autism spectrum.
In each of the examples above, the emphasis is on the person BEFORE the disability. This is not about being politically correct but about dignity for the teenager. Notice that the label is never in the form of a verb. A teenager with spina bifida is not “disabled;” rather, he has a disability. (NOTE: the preferred terminology is to say disability rather than handicapped, crippled, paralyzed, or retarded. All of these terms are outdated and derogatory toward a person with a disability. Each of those terms holds extremely hurtful historical significance, dating back to a time when people with disabilities were shunned by society and seen as less than perfect creations of God.)
Furthermore, it is never appropriate to refer to someone by their diagnosis. People who use wheelchairs should never be referred to as “wheelchairs” themselves. (This may sound obvious while you’re reading this, but it happens far more than you can imagine.) When you are referring to a person who has a disability, do not use limiting language. A teenager who uses a wheelchair is not “wheelchair-bound.” This language confines the teen to the wheelchair forever. Likewise, someone who has multiple-sclerosis does not necessarily “suffer” from this diagnosis. Rather than focusing on the tasks that someone cannot do, focus on what they can do.
The language we use has the capability to either build someone up or tear them down in a hurry. While using the appropriate language is likely cumbersome and maybe even difficult for some, it is critical to ensuring that our friends with disabilities are given the full opportunity to express themselves in the community without false limitations. This language will take some time to get used to. Offer yourself grace when you make a mistake and ask for forgiveness but also correct yourself immediately. While you may be embarrassed for a moment, the experience will begin to naturally change your language over time.
Rev. Phil Rogers is an alumnus of the Center for Youth Ministry Training. He serves as the Pastor of Youth & Young Adult Ministries at Long Peak United Methodist Church in Longmont, CO.
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