By Janelle Dill
In the last few years, I have struggled with one word: belonging.
As a disabilities advocate (particularly epilepsy), writer, artist, and Ambassador of Purple (the color of epilepsy awareness) for Somerset County, I have not found a place to fit with my skillset. Since my diagnosis of epilepsy in 2003, I have grown up from an illiterate person with a disability to a person who has been empowered by the incredible journey as an advocate. I believe God chose advocacy as my ministry to others, including those who have a disability.
The road towards advocacy didn’t happen overnight. I’ve had this dream repeatedly through the years. I think it started sometime after graduating from Geneva College in 2008. I “fell off the cliff,” in a proverbial sense. Falling off the cliff is a term used by psychologists for those who have a disability adjusting to life outside the educational domain. If a person, such as me, has a hidden disability and seeks employment, the potential employer has the right to discriminate against me (they could hire or fire me even if the Americans with Disabilities Act does not allow it). As a result, I did/would experience discouragement and isolation. One can either fight or fly into a complacent state. Trying to find employment that accommodates to my specific needs is a challenge; finding a potential employer who listens and is willing to work alongside someone like myself is no easy feat. Cutbacks, time management, and providing substantial health care benefits obscure a beneficial relationship between the able bodied and those with disabilities. This was the beginning of my journey toward advocacy, and it may surprise some to know that my problems did not end with seeking employment.
My biggest challenge at this point is the lack of positive leaders in church who have a disability. The churches I’m familiar with have no idea how to integrate those who have “diverse” abilities, both visible and invisible to others. Church operates in a “separate but equal” style of worship, learning, and growth when it comes to people with disabilities. In a 2016 study done by Through the Roof, a nonprofit organization founded by Joni Eareckson Tada, the group surveyed thousands of churches across the United States. The organization discovered one major issue: the disability community offered plenty of mature spiritual fruits– wisdom to offer and gifts to provide–however, not one of them was in a position of leadership or service. It makes me wonder: Why aren’t we utilizing “the least of these”? What are we afraid of?
I’ve encountered plenty of discouragers in the church. I had some tell me I can’t serve as a missionary. I’ve had individuals say I shouldn’t advocate about disabilities. I even had a relative pray my disability gets “cured.” I don’t want my disability to be remedied; I don’t want a prayer to fix my neurological, medical self. Don’t get me wrong; it is good to pray for help that I get through each day with its challenges. I want prayer for the growth and development of my spiritual self. I feel that if someone prays away the uniqueness of those who have visible and invisible disabilities, we lose the beauty of God’s creation. In church, those with disabilities are hidden away and not put in the spotlight for leadership roles. Too often, classes designed for those with disabilities are watered down or infantile. They are haphazardly thrown together, in a “here goes nothing” sort of way. It doesn’t work; the disabled get left behind and ignored, despite being amazing, incredible people. There is no such thing as a one size fits all standard for people with disabilities; the spectrum is too broad.
For me, trusting God has been a mountain-and-valley-roller-coaster ride. God’s helped me walk through a series of difficult circumstances. In 2010, I dealt with a dangerously low white blood cell count from an immune system crash. Later, I had to undergo tests for overnight seizures, which are particularly dangerous. I had to reduce my seizure medication because it did more harm than good to my body system. Currently, I am one year and six months seizure free. But, I am not cured of epilepsy; at any time, I could have another series of seizures. I get ocular migraines and have vertigo show up every now and again. I still have bad days and I forget stuff. My body won’t be in perfect health as long as I live.
I think about the apostle Paul when he describes his thorn in the flesh in II Corinthians 12:9-10,”I will most gladly boast all the more about my weakness, so that Christ’s power may reside in me. So because of Christ, I am pleased in weakness, in insults, in catastrophes, in persecutions, and in pressures. For when I am weak, then I am strong.” (Holman Christian Standard Bible)
Does that mean I enjoy every difficulty or should complain over it? Absolutely not! I don’t have control over my circumstances all the time, but I can always control my reactions to them. I can choose to be bitter or better. Too many well meaning Christians view a disability as either a form of martyrdom or glorified sainthood. That is NOT what Paul means at all. Disabilities are difficult. It is important to talk about the struggles, barriers, and misconceptions. Claiming a disability as a form of sainthood or martyrdom places the disability and those who have it as idols. It becomes objectified idol worship. It takes focus off the Creator and onto the created as a pitiable object or charity case. Being an advocate is tricky: you walk a fine line between sentimental and sensational.
As I enter another season of valley dwelling in the faith, I live as a desert rose. I have my thorns and not a lot of resources to aid me. A number of friends I thought trustworthy deserted me in a time of crisis. I’ve released countless dreams and broken promises. I’ve shed many tears, put into a bottle that only God has preserved somewhere. I’ve lost countless opportunities-and had friendships go south. Epilepsy and ocular migraines are always with me- and I adapt to the constant changes that come with them. God continues to utilize them and remind me I am not alone. I can do all things through Him and with Him. He’s given me this ability to advocate about those with disabilities as active participants in the church community. The disabled don’t need to change; they’re fine. Rather, the able bodied need to adjust their attitudes, addressing the issues that prevent growth. Doing so involves time, listening, patience, and lots of love. A good church community must work together with all its members-including the disabled. There is no such thing as a normal, able bodied person. All of us have a disability of some sort. It can be physical, mental, emotional, and for all of us, spiritual as a result of our fallen nature: . I hope that in my work as an advocate, many others will improve the church body’s function to a more interdependent, belonging place.