Cornerstone

“Disability affects every aspect of our lives so it is indeed a big part of our identity. However, our identity is rooted primarily in Imago Dei: we are first and foremost image bearers of God.”

Listening with Love

“So why do you use a wheelchair?”
“I have Fibromyalgia so, in short, I have chronic pain, fatigue, and other weird symptoms.”
“I see. You know, your body is meant to be holy and sin makes your body unholy. Have you considered repenting of your sin? That is why you have not been healed.”

This is a real conversation that I might have on any given Sunday. Over the course of the past 12 years of my illness being disabling I have pretty much heard it all.

“Jesus said to the woman who bled that it was her faith that healed her. Maybe you don’t have enough faith?”
“But you’re too young to be disabled.”
“You look healthy to me.”
“God will heal you because He is good.”
“My friend’s cousin had Fibromyalgia. She started exercising and now she’s fine.”
“Have you tried taking vitamins?”

The Struggle

At first, all this unwanted attention was disheartening. I was hurt, tempted to doubt what I knew to be true about God and my circumstances, and I wanted to hate these people for tormenting me. After a while, I got used to it and I began to have a radar for these people. They look me up and down. They look at my wheelchair (or whatever ability device I’m using that day) before they ever look at my face. They assess my body like I am some unknown animal in a zoo that they are trying to identify. The first word out of their mouth might be “hello” but their first question is not, “What is your name?”. No matter how much I get used to it, I always feel devalued, dehumanized, pitied, attacked, and vulnerable because I’m not agile enough to excuse myself from the situation. I already feel trapped in my broken body, and they made me feel trapped in their torturous conversation. I hated them for it.

About 4 years ago, after one such instance, my husband was helping me down the wheelchair ramp as I fumed. I was verbally processing what had just happened and I attacked her in a way I couldn’t in the moment. I ranted over the person’s theological ignorance and social inappropriateness. Then my husband said something pivotal. He said, “I think her intention was to comfort you.” I wish I could say I was immediately convicted and changed from that moment on, but I wasn’t. I was still very angry. Over time, however, and unfortunately with lots of practice, the Lord has softened my heart. The words still hurt, and I still get irritated, but God has given me eyes to see past the hurt to see people trying to love me the best way they know how. They just don’t know how.

Let Listening Replace Foolishness

In the conversations above, each person made the same mistake. They attempted to solve a “problem” they didn’t have the knowledge to solve. They didn’t know or understand me and - at least at that moment - they didn’t know or understand God’s will in illness and disability. We might hear God say as He did in Job 38:2, “Who is this that darkens counsel by words without knowledge?”

Listen to God

Though God never desires for us to suffer, He ordains it for our good and His glory. I understand that suffering is hard to accept, but my disability is not a problem for you to solve. Ultimately, it is an opportunity for God’s glory to be revealed through me. Should it be God’s will to heal me, He will do it. You can trust that God will remove my suffering when it has accomplished His purpose. You can not change what God has ordained.

As a person with a disability, I need you to believe - whether I believe it or not - that God, in His sovereign will, has given me the gift of fellowshipping with Christ in this way and that He will deliver me when the suffering has accomplished what He has purposed. You won’t like it, I don’t like it sometimes, but I need you to remind me of two things. First, God has placed His loving providence on me. There is no need to feel pity for me as if I am missing out on a full life. The truth is that while my life is full of suffering, God says that suffering leads me to an abundant life with Christ. I may not have the fullness of mobility, but God offers me the fullness of joy in the presence of God (Psalm 16:11). I may not have the fullness of daily activity from your perspective, but I have the fullness of Christ by whom I receive grace upon grace (John 1:16). Peace comes when you know and believe that God is in control of my situation and that He will bring it to completion.    

The second thing I need you to know and believe is that God will deliver a suffering saint from suffering either in this life when suffering has completed its purpose, or unto death as one who did not shrink back because of pain or limitation. We can trust God to act justly and do what is best for us because He loves us, He is good and His will for us is good. Because this is true, I don’t want something other than God’s will. I want God to complete the work He has begun in me. You help me best by surrendering to and being at peace with God’s good will and timing. Open your Bible and listen to what God says about it.

Listen to the Person

You may have just learned of my disability, but I’ve been dealing with my illness most of my life. I have asked all the questions, sought out the potential cures, and searched my heart before the Lord. If you are meeting me for the first time, you obviously can’t know all of that. If you speak before really listening to a sufferer’s heart and situation, you are bound to speak to us from your point of view and it is possible that our situation is something you are unable to conceive of from your current perspective. You are in danger of, at best, failing to meet us where we are, or at worst, hurting or offending us. If you were to ask me what I think of my suffering, I would say something along the lines of: God has called me to suffer well for His glory in the midst of daily life. This is my calling. Romans 8:28 says, “we know that in all things God works for the good of those who have been called according to His purpose.” Disability is included in “all things”. It comes with its own difficulties and potential discouragements but I have been called to disability according to God’s purpose. If you knew that I am content in my current situation you may be less burdened to find a way out for me.

Let Imago Dei Replace Imago Disability

Disabilities can be confusing and even fascinating so much so that they can become personified. It is easy then to get to know the disability, not the person. Disability affects every aspect of our lives so it is indeed a big part of our identity. However, our identity is rooted primarily in Imago Dei: we are first and foremost image bearers of God. The temptation is to be so distracted by the disability that you forget you are talking to a person. You see a disabled person, not a person who has been called to disability. You can spend so much time asking great questions about the disability and have spoken to a person as if they are a textbook. You may think you have served well, and while you may have gained some insight into their experience, the person is affirmed once again that their identity is their suffering. 

Often it takes more than questions about the pain and the mechanics of a condition to know a person called to disability. It demands further questions like, “Where did you get that jacket?”, or “How old is your daughter?” and even questions about the posture of a suffering heart. I could be crying in pain and what you may not see beyond my wheelchair is a joy that is so overwhelming, so indescribable that it can only be expressed in greater sobs. You may see a torrent of tears rushing from my eyes and assume I am weeping because of my physical situation; but in fact, I may be so overcome by God’s closeness and/or forgiveness of my sins that I can’t actually feel the everpresent pain. I don’t know about you, but when I feel the presence of God, I am so overcome I can only cry. The Creator of the Universe comes near to this suffering broken worm in love and care. With His sovereign, Fatherly hand He wipes the tears from my face. Wouldn’t you sob as you sing, “How Can it Be”? On the other hand, behind the tears could be a heart cry reminiscent of Psalm 88, “darkness is my closest friend”. You can’t know until you ask.

Let Respect Replace Pity

When we see disability, often our knee-jerk reaction is pity. Pity says, “You poor thing! You've gotten a bad deal. This is terrible, this isn't right, and something must be done to remove this suffering!” Pity forgets the sovereignty of God. Pity forgets the sufficiency of the Savior. Pity forgets the power of the Holy Spirit. Pity forgets the coming reward and rest of heaven. Scholar Thomas C. Weiss wrote, “... the social message repeatedly presented is that life with a form of disability is miserable and when the people around us believe that without questioning it, it may become very hard for people with disabilities to think anything different. Through this, people with disabilities come to internalize oppressive images and after that happens, it becomes very difficult for people with disabilities to hope for something better in their lives. At this point, suicide also becomes an issue.” Life with a disability is hard and pity only encourages us to forget God, giving momentum to our proclivity for tumbling into the abyss of despair. To turn this downward spiral upwards we replace pity with respect. Respect acknowledges the strength it takes to be weak and points heavenward.

It takes a massive amount of strength to endure with joy when every minute is painful, every movement is inhibited, you are alone for hours on end with said pain and limitation all the while striving to function in a world that is predominantly made for the strong and able. I recently found that the leading cause of death among people with Fibromyalgia who have no prior record of depression is suicide - 10 times that of the general population. This affirms to me that disability is not just hard, but it can be maddening. It takes great discipline to endure with joy under such a weight of suffering. A discipline that deserves respect.

You may witness someone having a “temper tantrum” in a grocery store. What you see is someone flailing about, screaming in a rage or panic, maybe even biting themselves all because someone touched them. What you do not see is that she has been feeling intense organic, non-willful irritation from the moment she woke up as a result of a disability. The metal on metal slamming of the carts sends a series of soundwaves that shake her to the core and bangs on her ears like drums rattling her brain. The overhead lights blind her like spotlights point-blank in her eyes. The quick movement of the people around her confuses her senses like an ever-moving Labyrinth causing vertigo and a feeling of being trapped in an ambush. Everything seems to move faster than she can adjust so that each attempt to move forward into the vegetable aisle is thwarted. And - the last straw - someone brushing by her shoulder feels like a weighted fireball on her skin pressing into her bones threatening to turn her inside-out. Sensory overload. Fight-or-flight. Meltdown. Like an athlete who vomits after a race when they've pushed beyond their current physical limits, you are witnessing a person with a disability pushed beyond their tolerance just doing daily business.

It took great strength for Jesus Christ to resist temptation to the point of death. Similarly, it takes much discipline, self-control, and eternal perspective to make it through a day without crumbling under the pressures of living with a disability. Outwardly we may seem exceptionally weak but inwardly is constant - or should I say chronic - strength training. This is why it is so important to intentionally ask questions about what you observe and be ready to extend grace. So we seek to listen to God, listen to and see the person which gives way to a respect for them. Now you are equipped to speak.

In the next post, we will look at some ways to confidently lean in and lovingly speak to people who are called to disability.

Read Part 2 >>

Jennifer Ko

Jennifer is a member of Cornerstone WLA and serves in the Counseling Ministry.

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