Mixed Messages about Disability

 China Boy

I have been trying recently to make sense out of three isolated incidents related to persons with disability. One is a shocking denial of services to a child in desperate need of a kidney—because she was disabled—right here in the USA. Another is the blatant declaration by a Christian university that no one with serious physical disabilities need apply for their posted position in theology. And the third, which gives me hope, comes from someone serving cast-off boys and girls (especially girls) with disability in China in the name of Jesus.

 

The first is a 2012 news story about the denial by the Children’s Hospital of Philadelphia of a living donor kidney transplant to Amelia, a young child with a severe developmental disability (Wolf-Hirschorn Syndrome). The mother’s account of her “negotiations” with the physician and social worker involved in the case are particularly chilling, because it became clear that the reason for the denial of this expensive medical procedure was because the child was “retarded.”

 

Technically it has been illegal in America, since the 1973 Rehabilitation Act, to withhold federally-funded services on the basis of disability, but it appears that this is exactly what occurred by an increasingly modern calculus. A medical procedure can be denied on the basis of excessive medical risks, but empirical data does not show that children with disability (including genetic syndromes like Amelia’s) are in fact at greater risk during the surgical procedure under consideration.

 

So the bottom line appears to be, in the words of Dr. Dick Sobsey, Professor Emeritus at the University of Alberta and former director of the J. P. Das Developmental Disabilities Centre, that “discrimination and negative eugenics are still a part of our world.” It is now an open question in America: Do you think a mental disability is a valid reason to deny a transplant? You can read her mother’s poignant account for yourself at:

 

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

 

Christians have long championed the conviction that all human beings are image-bearers of God, and therefore entitled to basic human rights and dignified treatment. But for whatever reason Christianity Today hasn’t yet covered or commented on this story.

 

The second incident I have been pondering is an advertisement for a full-time position for a qualified Christian academic to head up a graduate-level theological program at a Christian university here in the southwestern USA. The successful candidate will be expected to give leadership to a program designed to prepare students for the Christian ministry, and to inculcate them with the requisite spiritual maturity, doctrinal orthodoxy, moral wisdom and pastoral sensibilities to function as leaders in churches and communities. But the advertisement of the job opening ends with a list of some rather astonishing requirements. The successful candidate must possess the following:

 

*Ability to stand, walk, and sit for extended periods of time

*Visual acuity to read words and numbers

*Sufficient hand, arm, and finger dexterity to operate a computer keyboard and other office equipment

*Ability to exert up to 10 pounds of force and occasionally life and/or move up to 15 pounds.

 

Christians may believe in the dignity of persons with disability. Whether we want to hire them, or have them around, is evidently another matter altogether.

 

If I fixated on such depressing stories, I might become altogether jaded about the willingness of Christians, including myself, to be significantly “inconvenienced” by persons with disability. But there is, happily, another story to bring into the mix. I happen to know a courageous young single Chinese-American woman—a Christian—whose heart was broken by the plight of unwanted girls with disability in one of the poorer regions of mainland China.

 

She came back home to the States, organized a group of loyal friends and supporters, and is now back in China, setting up warm, nurturing group homes for these little outcasts of society. She has earned the admiration and cooperation of the Communist government for her patently selfless and loving assistance to the “thrown away” children of that society. She does this in the name of Christ.

 

She is not on a high-paid hospital board in Philadelphia. She is not flaunting her PhD in theology and running a graduate school. She is doing the right thing, thank God. Under the radar. Which is usually where we discover grace.

 

If you’d like to support the latter ministry with a tax-deductible contribution, just send me a note and I’ll be happy to give you the necessary contact information.

 

 

3 Responses to Mixed Messages about Disability

  1. Wendy Patrick March 25, 2012 at 11:25 pm #

    Thank you for taking the time on your site to address incredibly important topics. For people not struggling with disabilities it can be very easy to overlook/ remain ignorant to all of the difficult issues raised, as evidenced by the specific stories you discuss. Your examples of Christians willing to devote their time to helping individuals facing such challenges is heartwarming, inspiring, and a pleasure to read. Thank you for reminding us of the issues faced by this community, as well as the gracious individuals willing to volunteer their time to assist!

    • Melissa October 5, 2012 at 5:50 am #

      You are right Sandi, there is an incredible stmgia against the disabled, especially against the mentally ill. It is terribly unfortunate that this stmgia exists. There is little that can really be done. I mean the Americans with Disabilities Act basically lets you lie and say you don’t have a mental illness or whatever kind of disability you might have, at least that’s what I think the main benefit of the law is. For example I don’t say my disabilities publically on my web pages or anything. Once a lady called me on the phone and scolded me for this and I told her to review the ADA because it clearly lets me keep my medical status private. I’ve been in touch with President Obama and my Congressional representatives and my state authorities and local authorities advocating for the diabled and myself. I have an extensive education from University and I don’t back down I let them know exactly what I think on subjects they are making decisions about. Be bold, do not stand back and let yourself be trampled upon.

  2. Natalie February 11, 2012 at 8:33 am #

    Thanks so much for posting about this important topic. I recognized that top photo right away! It seems like God is definitely bringing the issue of disability and dignity more to the foreground at Bethel (at least, in my assessment!)—I just spent this week immersed in the life and work of Henri Nouwen, who shared how much of a blessing it was to do community life with people with disabilities—how these individuals can give such gifts and blessing to those of us without disabilities. And on Monday night, that was a topic of a special guest speaker in one of the MFT classes. Need to pray more about what God is showing us here at Bethel! God is certainly at work in my personal life to show me the value I have in him, apart from my “productivity” and abilities. It’s a challenging but necessary struggle to internalize the truth of his love apart from any “success” I might brand for myself. I’m also challenged to make space for those in my life who may be poorer in ability or spirit. It just might mean drawing near to the heart of Jesus together. Thank you for teaching us more about the image of God and the preciousness of each human life in our theology class.