A Parents’ Perspective: Ministry to Teenagers with Disabilities
|• Stories from the YouthWorker Journal Forum
• Detailed Definition of Disability
• The Five Stages of Grief
• How To Act Around a Person With a Disability
• Disability Statistics (9) 5
Search the literature of youth ministry for information on ministry to students with physical and mental disabilities and you will find…not much.
The subject 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.
We’ll begin by assuming that you already exercise good judgment by following routine good practice in running a youth group like having co-ed adult leadership when you have co-ed teen groups. You’ve read Better Safe Than Sued and err on the side of caution on issues of physical safety for your group. Important as safety and good practice are in general, they become even more critical if you have a disabled teen in the group, for reasons that will become apparent as we progress.
We’ll define a “disabled” teen as one with one or more permanent, major, life-altering conditions. A teen who “by reason of a physical or mental impairment, is or may be expected to be totally or partially incapacitated for independent living or gainful employment. ” See the “Detailed Definition” sidebar for a more complete definition of “disability.” We’ll define a “normal” teen as one who’s not disabled.
While every student is unique, there is a special uniqueness to a disabled student.
• A blind student has very different practical issues to cope with than a deaf student, than a mentally retarded student, than a wheelchair-bound student.
• A student may have a significant disability she’s learned to cope with so well that it may not be readily apparent. There may be no outward physical manifestation (a student with a heart defect or reduced pulmonary function, for example).
• A student may have multiple disabilities.
• Disabilities may be partial or total. A person may be partially sighted while still “legally” blind, or not legally blind, but with visual acuity too poor to get a drivers license.
• A student may try to hide his disability because he’s ashamed of it.
• A disability may be congenital; it may be acquired before reaching your group; or it may be acquired during the time a teen is a member of your group. The disability may be acquired suddenly or progressively; it may be the result of disease or an accident. The timing and manner of the onset of the disability can have a significant impact on the teen’s progress in dealing with it.
• Disabilities have definite subcultures—as you might expect when people have a commonality of interest. Within the subcultures there can be widely divergent ideas about rehabilitation, appropriate social services, how to relate to the “normal” community, how to cope with the disability, in short about just about every thing to do with the disability.
So What To Do?
You could blow the family off and tell them “most youth ministries are not equipped to handle students with disabilities.” You probably wouldn’t want to say it in so many words, of course; just don’t commit to anything, make yourself hard to find, and let them figure it out for themselves. Some youth pastors choose to focus on their non-disabled students and aren’t interested in making any accommodations for those with disabilities.
However, if you opt for the challenge of ministering to the disabled teen, the first and last step (obviously, but how often do we overlook the obvious?) is to pray. Pray for the young person to feel welcome. Pray for the other kids to exert themselves to welcome him. Pray for yourself for wisdom and ability.
Building a relationship is key. If you establish trust, it will help you get over the “oops” moments when you do or say something ignorant. And no matter how well-intentioned or sincerely committed to making your ministry open and accessible to the disabled student you are, from time to time you will have awkward moments.
Scope out the kids in the age cohort just before the age of the youth in your ministry. When you know you have a disabled student coming up, be proactive, contact the family, and say something like ,”I’m ignorant, and have a lot to learn, but I’m committed to ministering to your child and enabling her to participate in the ministry to the fullest extent possible.”
While you can’t plan your entire program around one student, give the student some consideration and occasionally plan activities in which he can be involved. If you have a visually impaired student, provide materials that are readable. If you have a wheelchair-bound student, keep the junk off the floor, do your best to make your youth room accessible, and select accessible venues for events.
The other students may pull together and enfold the disabled student in the group and outside activities, or maybe not. There may be students who are openly callous and disrespecting. Step on disrespect, teasing, or bullying instantly—and make it an evictable offense if it doesn’t stop. More likely, a substantial percentage of your students may just actively ignore the disabled teen and exclude her from their circle inside and out of the group. They’re not actively rude; they don’t spit on the kid’s shoes; they just act like she’s not there.
Things To Keep In Mind
While not an exhaustive list, here are some things to consider when you have a disabled student in your ministry.
• Losing a sense does not mean the other senses become more acute to make up for it. The classic misconception is that the senses of persons who are blind become more acute to compensate so they have more acute hearing and sense of touch. Not true. However, because persons who are blind rely more heavily on other senses for information, they can learn to use those senses more effectively.
• If the disabled teen has someone assisting him, talk to the teen, not the assistant.
• There will be awkward moments. You’ll ask a blind teen if she filled out the “green” form. You’ll ask a deaf student if he’s heard the latest CD from Squeakratz.
• Some disabilities seriously affect the student’s ability to communicate. A blind student can’t read your body language. A deaf student may need a sign language interpreter; she won’t hear you calling for her when she’s not looking in your direction.
• Maybe in your group you have a sibling of a disabled teen. The sibling will have his own set of issues. Maybe he’s cheerfully taken on the responsibility of helping the disabled teen, and accepts the impact a disabled kid has on family dynamics. Or the sibling may bitterly resent the real or perceived additional attention and family resources devoted to the disabled one.
• Having a disabled child invariably stresses family dynamics. There’s the monetary expense of special education and adaptive technology. There’s the emotional stress everyone experiences in dealing with the disability. And since the teenage years are a time of change and transition for everyone, there’s no finally coming to grips with a disability and getting settled—theress always something new to have to deal with.
• Teens with disabilities go through all five stages of grief over and over as new situations present themselves. A young child who is disabled may not fully appreciate that she is different from the other kids. But starting with the teenage years, the disabled child has her nose rubbed in the differences every day. Major rites of passage can turn into significant emotional crises as, for example, when the visually impaired teen who’s been getting by realizes that she’s just flat out not going get a drivers license like everyone else in her peer group—not ever.
• Anger can be even more of an issue than usual with teens. Anger with help when you don’t need it, or no help when you do need it. Anger with malfunctioning and poorly designed adaptive technology. Anger with junk left on the floor posing a trip hazard or blocking passage in a wheelchair. Anger with not being able to hear or understand the conversation. Anger with the person at fault for the accident that caused the disability. Anger at God for the congenital or disease-caused disability. Anger with too much attention. Anger with too little attention. Anger vented on you with no warning just because you happen to be handy.
• Activities of daily life can be more difficult and time-consuming. Getting dressed is harder if you can’t tie your shoes. Putting on makeup is more difficult if you can’t see to apply it.
• A disabled student may be away much of the time at a special school. Try to stay in touch and make her welcome when she is home on break.
• Some disabilities may have physical disfigurements as direct or secondary effects. Persons who are blind may develop “band keratopathy” where the eye gets a filmy appearance. Misshapen or missing limbs are hard to conceal. A student with Down’s syndrome may have slanted eyes and stubby fingers. In our beauty-obsessed culture, these disfigurements may be off-putting to the other students (in fact, they may be off-putting to you until you get used to them).
• Necessary adaptive technologies and techniques may be either inherently embarrassing, or they may cause embarrassment if they fail. It’s bad enough a teen has to worry about acne or whether his hair is okay without having to worry about his leg bag leaking or getting trapped in an improperly designed “accessible” restroom where he can’t open the door once he’s inside.
• Asking for help can become tiresome. A disabled teen may pass on an event just because she is tired of having to have someone bring her a plate of food when she can’t maneuver the chow line, ask for help with opening doors, or strain to see or hear what’s going on.
• Parents may seem overprotective. They may have good reason to be. Do your best to accommodate their concerns. Hard to believe as it is, the parents really do know better than you what’s best for their kids, and what their child is and is not capable of. They’re not eager for their teenager to be part of your learning curve. The parents and the kids are the people who have to live with the long term consequences if something goes wrong. Chances are they’ve heard “Trust me, I know what’s best for your teen” from people with much glossier credentials and experience than you; chances are they may have been burned badly by some of these people, as well.
• Comments like, “someday medical science will come up with something that will fix [whatever],” or “God would heal you if you…[insert one or more of the following phrases: ‘had enough faith,’ ‘prayed hard enough,’ ‘confessed all your unconfessed sin,’ ‘gave your life to him’]” are probably not helpful.
• Find an empathetic, same-sex staff member who can devote time outside of youth group settings to establish a positive, one-on-one relationship with the student. Make sure that person understands that once he has a relationship with that kid, the student may become attached to the hip of the leader he bonds with. This is not unusual for special needs people. When the young person realizes that a particular adult cares about and understands him, she’ll most likely gravitate to that adult regularly.
• Talk often and openly to the parents. Ask then these questions: “What are your child’s most important interests?” “Are there any sensory needs or dislikes that we should know about?” and “Is there anything that your child finds upsetting or uncomfortable?” These questions can help you understand the social and intellectual level of the kid, as well as any situations that could perhaps trigger inappropriate behavior. Let the parents know how the student is doing in the group.
• If parents think their presence is necessary, you should allow it. They know more than you do about their child’s situation, and they probably have legitimate concerns you’ll never really understand.
• At the end of the day, for whatever reason, the teenager may not participate in your group. As long as you’ve made a good faith effort to welcome her and provide reasonable accommodations, that’s okay. In that event, do your best to keep up communication with her and her family. Every so often, exert yourself to extend an invitation if there’s some event you think would be of particular interest in which she can participate.
If you are in youth ministry long enough, a student with a disability will come into your group. How you and your group deal with the situation will tell you, and a watching world, a lot about yourselves.
Disclaimer: The views and opinions expressed in the YS Blog are those of the authors and do not necessarily reflect the opinion or position of YS.