Lessons on the Journey With Disability

I found an undated article in some old Disability Concerns files. The paper is yellowing, but the thoughts are as relevant now as when they were written. The author, Sheila Stopher Yoder, wrote about her own son Justin’s inclusion in the life of their congregation. At the time she wrote this article, “Religious Inclusion: One Pilgrim’s Learnings,” Justin had “limited use of his legs, bowel and bladder incontinence, and a shunt in his ventricles to drain the extra fluid in his brain. He is keeping up with his peers in school, and is an award-winning soap-box derby car racer.”

Yoder names a number of lessons she learned over the years. All quotes from her article are in italics, the rest of the words are mine.

Self-advocacy is a common term used by professionals who work with people who have disabilities. I’m supportive of self-advocacy, but I get tired! I advocate for my child at school, in the community, at church, and with doctors. How refreshing it is to have others join us in these efforts. It is appropriate that these be your brothers and sisters in our religious community.

Yes! The body of Christ, that is the church, has many members, but is one body. No part should feel as if it is unneeded, nor should any part tell another that they are unwanted. “God has placed the parts in the body, every one of them, just as he wanted them to be.” (1 Cor. 12:18 NIV) Jesus said there is no greater love than to lay one’s life down for one’s friends. One way to “lay your life down” is to join walk with someone else in their journey. Disability Concerns published a book about walking alongside others affected by disability: A Compassionate Journey.

People will have different answers to the question of why God allows or causes people to have disabilities. Allow a person the time to find his or her answers. Offer your “answer” only when you are asked.

Sounds like great advice to me. Who wants to listen to people prattle on about “God’s will” when, frankly, they don’t have a clue what the mind of God is with regard to any particular situation? That kind of behavior is unloving and even rude.

There is a difference between “healing” and “cure”. Do not let “cure” be the stumbling block between you and your child or between you and God.

Many non-disabled people think that everyone who has a disability wants to be cured of their disability. While true for some, I would guess that searching for a cure is a low priority for most people with disabilities. “Healing” may come not through cure from disability, but through a sense of belonging, a sense of purpose, and a sense of value. Belonging, purpose, and value cannot be accomplished on one’s own, but must come through involvement in a community. What better community for this to happen in than the people of God? It’s part of our calling as the people of God!

The church community can and should be a source of strength and support to families and individuals affected by a disability. Look to the church as a resource.

For the church to be a resource, the people in the church must not only think about caring for, but also about developing friendships with, learning from, and working with people in their midst who have disabilities. See the 5 Stages of Disability Attitudes for a helpful continuum.

Well-intentioned, educated people still overlook children and adults with disabilities. Even in a church that values inclusive worship, the advocacy and education by parents and individuals with disabilities never stops. Parents and self-advocates cannot assume people will know what we need. We must tell them.

Circling back around to Yoder’s first “lesson”, even though people with disabilities and parents, caregivers, and friends all get tired of advocating for themselves and their loved ones, they keep at it because they have to. Please be patient when somebody seems demanding, or sharp-tongued, or sarcastic. Sometimes it feels as if people will listen only if our tone is shrill. Better yet, come alongside, journey with, listen, learn from, and engage with others in their journey. 

I’ll conclude with Yoder’s final lesson:  

I continue on this journey of knowing more about this God I worship. Each day I learn more. Having a son with a disability has been much of this learning. It has not been easy and is not the path I would have chosen, but it is a beautiful path.