Morphing Disability

Two news stories regarding people with disabilities appeared this week.  Both of them made me stop and think.  The first was about a woman who was seeking to pay surgeons to make her permanently physical disabled.  The second was about a team of researchers at the University of Massachusetts who believe they have unlocked the first step in turning off the 47th chromosome of Down syndrome.  Both stories challenge our thinking on medical ethics, social integration, identity, anthropology, and ministry.  What does it mean to be disabled?  Is this a step that the biomedical sphere should engage in?  Does the advances of medicine even contribute to our socially constructed ideas of disability?

Many people with late onset disability often wish they could return to their previous state – because they have knowledge of it.  Those with lifetime disability have no frame of reference outside of disability and often will express the desire to remain with that particular disability.  Both groups attempt to assimilate in culture all the same.

Perhaps the ladies request to become disabled is shocking because those of us who are not yet impaired cannot fathom a life devalued like that, never realizing that we are the ones that contribute to that very perception.   Our minds quickly argue that she is in need of serious psychological healing.  

Yet are we not the ones who require a cure?  Perhaps if we developed meaningful relationships with and integrated people with disabilities into all aspects of our lives and friendships, this request would not even register in our consciousness – we would welcome her not matter what.  Our problem is that of blindness. Sharon Betzer, author of Spirit and the Politics of Disablement neatly relates this optic problem with the story of the threatening man who became an unnoticed invalid with the wave of a white cane.  The first picture invoked fear; the second was not even noticed.  Neither of these reactions are appropriate.

It is no longer unfathomable to think that genetic science might provide clues to identity.  While some (me included) appropriately wonder if we are crossing a line that belongs to God, we do so having already benefited from numerous technological and medical advances that crossed that same line years ago.  We forget our own heritage.  Yet my main concern does not lie in the fact that someday this might be possible and some may choose invasive corrective procedures.  It rests in the fact that those who do not choose it may become further alienated and disfranchised.

Our calling as disability ministers remain clear – whatever choices people make, whatever identity they absorb as part of the bearer of Christ’s image, we are to prophetically gather all in one body to worship.

UN Convention on Rights of Persons with Disability

The disability world has been abuzz the last few days as the long awaited UN Convention on Rights of Persons with Disability makes it to the full floor vote of the US Senate this week.

Nearly two decades after the ADA was passed in the US, this land mark convention establishes a common ground for disability rights across the globe.  Over 100 countries have signed and ratified it.  The US is one of the few that has not yet.

There are obviously several reasons for this.  The first is that a large group in the US have never cared for anything to do with the UN.  That's all-right.  They should continue to voice their opinion.  In fact, both American parties had concerns over the potential American sovereignty issues, so ensured that stipulations were put into place that essentially stripped this convention, like many other UN conventions, of any legal authority in the US.  In essence, it is truly a non-binding policy statement. The second is that many are concerned that the  language used in it will promote an anti-Christian and anti-parent agenda.

The first reason is strictly political.  Nations are valid forms of government, yet have artificially constructed boundaries.  Our democratic republic allows us as a people to exercise our voice in our government.

The second reason is strictly religious.  Our moral compass serves to inform our actions.  Many Christians want to retain their God given right and authority as parental stewards of their children.

It is when these two reasons intersect and become blurred that confusion reigns.  As a conservative, evangelical pastor active in the disability community I understand and sympathize with many of my good friends' opinions but remain puzzled and concerned.

1) All people are created in the image of God.  The UN convention inherently seeks to offer the status to all people.  It is the church's responsibility to awaken that image of God into Christian service, not the United Nations.

2) The convention's strictest language about abortion (a red button issue for many evangelicals like me) actually places limitations on it.  This is not necessarily a pro-abortion or anti-abortion policy statement. It is, however, a pro-life statement.  In fact Article 10 is quoted below:

Article 10 - Right to life

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

3) At no point does it limit what families or churches can do.  As a governmental policy, it does suggest what the state could do if others abdicated this area -- but leaves that up to local governmental control.  If anything, it's probably shameful to those of us in the church who have abandoned this responsibility.

4) Have you seen many persons with disabilities in church recently?  What about at the local Christian school? A quick survey of these religious organizations leads many to conclude that Christianity does not value persons with disabilities.  Two decades ago, ACSI actively lobbied against the passage of ADA. Now even more good Christian groups are lining up to oppose this policy.  I am concerned that our evangelical  well intended actions may be having drastic long term consequences.

But since I am a special educator, disability advocate, parent of a child with Down Syndrome, an evangelical pastor, but not a politician, I will not be contacting my representatives either way.  Instead, I would like to issue this challenge:

Take the UN statement.  Replace any governmental language with church language.  Bring it to your board of elders, your bishop, your presbytery.  Affirm the rights of any person with a disability to worship from the pew, preach from the pulpit, serve communion, be approved as an elder, and function in any of the gifts that the Holy Spirit liberally offers.

If  you are honestly ready to do that, than do NOT vote for this resolution.

[The opinion reflected in this article is solely that of Rev. Marvin J. Miller and is not representative of any of the official positions or opinions of any of the  ministries in which he serves.]

Full Text of UN Convention

http://templatelab.com/convention-on-the-rights-of-persons-with-disabilities/

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UPDATED 4/19/18 to reflect updated url link for Full Text of UN Convention.