Pale Faces – by Jill VandeZande

18 John’s disciples told him about all these things. Calling two of them, 19 he sent them to the Lord to ask, “Are you the one who was to come, or should we expect someone else?” 21 At that very time Jesus cured many who had diseases, sicknesses and evil spirits, and gave sight to many who were blind. 22 So he replied to the messengers, “Go back and report to John what you have seen and heard: The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised, and the good news is preached to the poor. 23 Blessed is the one who does not fall away on account of me.”

(from Luke 7, NRSV)

For many years of my life, this has been a favorite passage of mine. In this passage, John the Baptist’s disciples are sent to Jesus to basically ask him, “Are you really the Messiah? ‘Cause you sure don’t look like what we thought the Messiah would look like!” In response, Jesus says, “Look at the evidence. It may look different, but it’s still there, if only you have eyes to see.”

I loved this passage because of its message of restoration and healing. Not because I expected—or even wanted—to be healed of cerebral palsy in this life, but because by Jesus holding up the healing of the disabled as the example of who he is, he was using me and those like me as a demonstration of his power. Imagine that—that the Master and King of the Universe is seen clearly in those who have no power! If that’s not antithetical to this world’s message of where power resides and what it looks like, I don’t know what is.

A deeper level of this passage was opened to me when I grew older and discovered the wonders of cross references in Scripture. What many do not realize is that Jesus’ statement of authenticity is drawn from several passages from the book of Isaiah (Isaiah 26.19; 29.18-19; 35.5-6; 61.1).

As I went back to look at these passages, I was amazed at what I saw from Isaiah 29.18-19. In this passage, Isaiah is prophesying about what will happen to the city of Jerusalem when it is besieged by Babylon. It’s not a pretty picture. But God also speaks through Isaiah of the restoration he will bring as a result of Jerusalem’s destruction. This is what the LORD says through Isaiah:

18 In that day the deaf will hear the words of the scroll, and out of gloom and darkness the eyes of the blind will see. 19 Once more the humble will rejoice in the LORD; the needy will rejoice in the Holy One of Israel.

One can easily see which part of these verses Jesus is quoting. But then Isaiah goes on to say this in verses 22 and 23 as he lists other signs of God’s restoration:

22 Therefore this is what the LORD, who redeemed Abraham, says to the house of Jacob: “No longer will Jacob be ashamed; no longer will their faces grow pale. 23 When they see among them their children, the work of my hands, they will keep my name holy; they will acknowledge the holiness of the Holy One of Jacob, and will stand in awe of the God of Israel.

When I read these verses, I sat back in shock and amazement. Really? Someday God would restore not only my body, but will remove my shame? Because if there is anything that is more crippling for me than cerebral palsy itself, it is the shame that comes along with having it. We living here in the United States do not have a mental or emotional construct for shame (unless you feel it), but it is a feeling that you—in your being—are wrong, dirty, mistaken, and objectified. In short, a nonperson.

Sadly, the church does not help to alleviate the shame that comes along with having a physical, mental, intellectual, or behavioral disability. In fact, the church’s line of reasoning usually falls in one or more of the following categories:

1)      God made you this way because he knew you were special enough/strong enough to handle it

2)      You have a disability because of the sin that exists in our world. You are a special example of what “original sin” can do.

3)      God made a mistake. Something happened (perhaps Satan tried to destroy you), but God stepped in to stop it just in time.

Believe it or not, I’ve had all three of these justifications said to my face.

For those of us who have disabilities, we (wish we could) respond to the church’s reasoning like this:

1)      I am not strong! Nor am I special! If this is what strong and special looks like, you can take it and shove it!

2)      Why am I an example of original sin? I didn’t do anything to deserve this! (Most who have physical disabilities—like me—were born with them).

3)      I thought God didn’t make mistakes. And I thought he was stronger than the devil. Are you telling me God is imperfect, or that God is weak?

Clearly, all three of the church’s reasonings are dissatisfying, and in some cases (particularly with #2), blame is cast on the person who has the disability. Even if your church has enough sensitivity to not respond to disabilities in any of these three ways, I can guarantee you that the disabled people in your midst wrestle daily with thoughts like this:

I (and my disability) cost so much money. The treatment, the accommodations, the adaptive devices, etc. have taken money from my caretakers and my parents that they don’t have. I take up so much of other people’s time. There’s no reason why they should have to help me. But if they don’t help me, I won’t be able to live my life. They don’t deserve to have my life imposed on theirs. This is my junk. This is my life. Do I deserve to live it? I caused this.

Those of us who have disabilities feel a great amount of shame over the imposition that we are upon others’ lives. Most of us have had to learn to advocate for ourselves, so what we’ve had to learn to do is advocate for being an imposition.  Talk about uncomfortable! Sometimes we stay silent about what we need because we do not want to insert ourselves into others’ lives. We also hesitate to show any sign of weakness, because it will make people wonder (yes, even those in the church), “Can she do this job? Is she okay?” For the record, yes, I can, and yes, I am. If you want to know why I do things differently or a bit slower than you do, let’s talk. It’s very detailed (and I think quite interesting), but it has to do with the fact that people with cerebral palsy use three to five times the amount of energy that able-bodied people use when we walk and move around. Essentially, not a single muscle in my body moves the way it’s supposed to, and when they do move, I expend massive amounts of energy.

But just because I do things a bit slower or differently from how an able-bodied person might do them, does not mean I should feel shame. The way I do things isn’t shameful, it’s just different. This is what Isaiah 29.22-23 taught me. It is the world that equates difference with shame; it is time for the church to stop making the same equation. We are called to be different, so let’s think differently. Indeed, Isaiah 29.23 says that we may even see the holiness of God in the faces of those who are usually covered with shame. I believe we can claim the fulfillment of these verses now, because humanity was restored with the coming of Jesus Christ (as he says in Luke 7!)

What would happen if you told the people with disabilities how you are helped when you help them? What would happen if you allowed them to use their gifts and abilities within their Church Body? What if you asked to hear their perspective on life instead of assuming that that they always think and see the way you do? What if you offered help instead of always making them ask for it? What if you saw them as loved and valued? What if?

I long to see a Church and a world that sees Holiness in difference instead of dissonance. I long for a church that works to bring the restoration Christ has already inaugurated. Until then, I rely on God and a few special people who help to remove my covering of shame. By the grace and power of God, my face is no longer quite so pale.

5 thoughts on “Pale Faces – by Jill VandeZande

  • October 12, 2011 at 12:55 pm
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    Thanks so much, Jill! You spoke straight to my heart this morning and I heard a prophetic Word! I am sure I unintentionally give off the feeling of being imposed upon at times as I seek to teach/model increased independence…and I am continually trying to “teach” my daughter to advocate for herself. Now I see another side to that — the burden of having to ask for help, to ask for assistance. I am guilty of not offering help as I don’t want to assume someone with a disabiity needs help – I believe in their capabiities! So it is out of good intentions, but I see now that offering to help can also be life-giving and a blessing to others, not merely a signal that I don’t think s/he is capable. THanks again for sharing your thoughts – and your life – with us!
    Many blessings upon your ministry!!!

    Reply
    • October 12, 2011 at 3:12 pm
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      Ann,

      As with everything in life, it is a balancing act between asking for help and having it simply offered to you. Those of us with disabilities, are of course, always free to decline your help, and that very act can be empowering as well, because you’ve given us permission to make our own decision.

      One of the markers of “nonpersonhood” is being stripped of your ability to make your own decisions. I’ve had people tell me that I can’t ride my bike to and from work, and that I MUST accept a ride from a person because it’s “safer” that way. Really? Do you realize how many car accidents there are everyday? My point is, what they tried to do was take away my ability to make my own decision about how I would get to work. And they do this so that I fit in their neat little box of what being “disabled” looks like. It’s easier for them to handle that way.

      The balancing act in making a person ask for help or having it simply offered lies in your ability to discern this question in your daughter’s life. “Has she done enough fighting for the day?” Having to fight for oneself day in and day out is fatiguing in every way possible, and there are days when we simply would like a break. And then there are days when I don’t fight enough.

      Blessings to you, Ann!

      Reply
  • October 13, 2011 at 12:31 pm
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    Jill, I love getting to know you more and more. I think it’s incredible to watch God use your deep thinking to work through the logic of something to empower others. You are truly gifted.

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  • October 13, 2011 at 2:06 pm
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    Jill–this is beautiful in its honesty. Thank you for sharing your struggles. I think it was Henri Nouwen who wrote that others will recognize us as Christians by the scars we bear…so we must be willing to show our scars to the world so others will recognize us as sisters and brothers. You are a lovely woman of God!

    Reply
  • November 10, 2019 at 2:43 am
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    I’m blessed that you are in my life. loving you always.

    Reply

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