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Friday, December 7, 2012

Santorum, the UN and CRPD: Stick to the Facts


I am a bit late to the party. In the last few days I have carefully followed the reaction to the Senate’s vote not to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Two themes have emerged in the mainstream press. First, Santorum played a key role in the defeat of the CRPD as did other extreme right wing Christian conservatives. The ability of a small number of Senators to defeat a benign treaty such as the CRPD is indicative of a hopelessly dysfunctional government. Second, the United States is the world leader in disability rights. The CRPD used out ADA as model legislation designed to extend the same protections Americans with disabilities enjoy to the rest of the world.  

I am delighted to see disability become a hotly debated news story. However, I am not impressed by the two themes that have emerged as news.  Indeed, I get angry each time a commentator lauds the ADA and asserts people with a disability in America should consider themselves lucky. I can assure you I do not feel lucky when I leave my home and encounter bias on a daily basis. I do not feel lucky when I walk in downtown Katonah where I live and cannot enter 90% stores because they are inaccessible. I do not feel lucky when I cannot get a cab driver to stop for me in New York City. I do not feel lucky when I come across elevators filled with trash. I do not feel lucky when I try to access subway systems that remain grossly inaccessible. I do not feel lucky when I try and get on a bus and the driver has no clue how to use the wheelchair lift. The point I am trying to stress is that our country and court system has done its level best to gut the ADA. In my experience towns nationwide do their best to avoid complying with the ADA.  School districts are the worst offenders in this regard in large part because so called special education is perceived to be an unwanted economic burden.

The idea that the United States is the world leader in disability rights is fiction. There is a divide between what is said about the ADA and the experience of being a person with a disability navigating our social and physical cultural environment. This divide has come up many times when I discuss disability rights with my son. Recently he has used a term I find fascinating.  In one of his political science classes his professor has maintained we are living in what he calls “a post factual world.” As I understand it some of his professors believe facts are not as important as the way words, opinions really, can be spun. Words and opinions do not need to have a basis in fact in a world dominated by social media. The news is delivered so swiftly that the way news is delivered is more important than substance or facts.  I was thinking of this when I read what Santorum had to say about the CRPD. Santorum stated:

Who should make the critical health-care decisions for a child with a disability? A well-meaning, but faceless and distant United Nations bureaucrat, or a parent who has known, loved, and cared for the child since before birth? The answer should be obvious, and today the Senate made the right decision by rejecting the United Nation’s Convention on the Rights of Persons with Disabilities (CRPD).
The reason I have so strongly opposed CRPD is also simple. Karen and I have experienced first-hand as we care for our little blessing, Bella, that parents and caregivers care most deeply and are best equipped to care for the disabled. Not international bureaucrats.

Santorum’s words were reiterated even more strongly in the far right press.  Patriot Voices railed against the CRPD.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) would give the U.N. oversight of the healthcare and education choices parents with special needs kids make.  It is outrageous that the government could tell you and me what is best for our children, particularly when they’ve never met the child. If this were to pass, CRPD would become the law of the land under the U.S. Constitution's Supremacy Clause, and would trump state laws, and could be used as precedent by state and federal judges. This treaty would give the government, acting under U.N. instructions, the ability to determine for all children with disabilities what is best for them. It also would give the U.N. discretion over decisions about how we educate our special needs kids, and could potentially eliminate parental rights for the education of children with disabilities.
Santorum  and Patriot Voices words have no basis in fact. None. There is no chance the CRPD would give international bureaucrats control over children with disabilities. The CRPD does not in any way shape or form alter or amend American laws and certainly not the ADA.

Santorum went on to state:

The best interest of the child” standard may sound like it protects children, but what it does is put the government, acting under U.N. authority, in the position to determine for all children with disabilities what is best for them. That is counter to the current state of the law in this country which puts parents – not the government – in that position of determining what is in their child’s best interest. Under the laws of our country, parents lose that right only if the state, through the judicial process, determines that the parents are unfit to make that decision.In the case of our 4-year-old daughter, Bella, who has Trisomy 18, a condition that the medical literature says is “incompatible with life,” would her “best interest” be that she be allowed to die? Some would undoubtedly say so.
The above is ludicrous. Worse, it is perilously close to conspiracy theory lunacy. Let me get this straight. If the CRPD is enacted our government will use UN authority to determine what is in the best interest of a child with a disability. So according to Santorum his daughter would be allowed to die because his daughter has Trisomy 18.  I am not exactly sure how an international bureaucrat will accomplish this but I do know one thing—it is not possible. If Santorum’s words and opinions are not bad enough he has used his beloved daughter Bella as a political prop. Yes, when Santorum needs to establish himself as the champion of disability rights he is sure to include Bella in every possible photo op.

In closing, let me turn to the inconvenient facts. Why is Santorum and the far right so worked up? They strenuously object to the CRPD because of article 7 and the following sentence: “Children with Disabilities: In all actions concerning children with disabilities, the best interest of the child shall be a primary consideration”. This statement is not designed to address the status of children with a disability in this country.  The fact is 80% of all people with disabilities live in developing countries. Most of these countries have a profound shortage of doctors.  Health care standards are grossly inadequate. Most people with a disability live in abject poverty and the majority of children with a disability never celebrate their 21st birthday. This is a human rights issue few are willing to discuss. To conflate this grim reality abroad with groundless concerns about international bureaucrats taking control of disabled children’s live is factually bankrupt.

If anything good can be found in Santorum’s opposition to the CRPD it is that some might be inspired to actually read the CRPD and by extension think about the ADA and disability rights. As I read it the CRPD embodies the principles set forth under the ADA. By principals I understand the CRPD to be about the civil rights of people with a disability.  Now this is the perspective I would like to hear discussed by the mainstream media. 

5 comments:

Richard said...

Thank you for the clarity in your piece as most of the writings about this subject that occupy the bulk of internet search results reside in the biased, ill-focused fringe realms of the CRPD debate.

Your piece also possess a great weight of validity due to the fact that you belong to the community of citizens that this treaty is supposed to represent.

It is sad that the opposing representatives decided to take up the position of banishing a non existent boogie man rather than stand for the civil and human rights of disabled citizens.

Richard
Son of the South

Elizabeth said...

I confess to getting into many heated debates on Facebook and otherwise over this issue and while I did so, I resorted to lauding the ADA here and there -- knowing full well that it and IDEA are uniquely flawed. At one point, I told someone that I am not particularly "patriotic," and was chastised, naturally, and indirectly as she stated that our country is the greatest and most free on earth. Thank you for sharing your strong opinion on this -- I hope to share it.

Maggie World said...

Elizabeth did indeed share this and brought me here. Your articulation of this issue is spot on. Yes, the ADA may indeed be the "gold standard" but it's not pure gold and, in any event, is more of an ideal than a reality. I am particularly fascinated with the "post factual" comment. That too sums things up so well.

As it is spun, so shall it be.

Or as I often say, never let the facts get in the way of a good story.

Lynn said...

The "post-factual world" is a fantastic turn of phrase, though it might give the preceding era a tiny bit more credit than it deserves :-)

And the ADA as the "gold standard" reminds me very much of discussions about educational standards. I've been involved in several Facebook conversations that involved parents across the US reacting to articles that rank the quality of state standards for science and other subjects. I've had to refute all sorts of envy from other participants whose states ranked lower than California, where I live. Yes, California employed high-paid consultants to define detailed and rigorous standards for all subject areas... but that doesn't mean we're meeting them! The binder of state standards for music is several inches thick, yet most schools have no music program at all. Why anybody puts energy into comparing standards that nobody is meeting is beyond me.

The ADA has a little bit more legal clout than a fictional curriculum standard, but only a little. (Which is all the more reason it's so far out in left field for Santorum-et-al to suggest that a UN endorsement of the same standards would have any teeth that could possibly affect their lives.) The treaty is more symbolic than anything. But rejecting it is more than symbolic; it is another tangible step in our country's march towards putting a price tag on dignity that only the economically and politically advantaged can afford.

Now if only people would quit with the pathos about "wheelchair-bound Bob Dole." Speaking of dignity. That wheelchair enabled him to show up, make a powerful statement of principle by his presence, and expose the new Teabagger generation in his party to a small taste of the public shame they deserve. Semantic nit-picking perhaps, but it still bugs me.

Esther said...

I agree completely about Bob Dole. Nobody is wheelchair-bound; a wheelchair is a mobility device. People are confined to prisons, not wheelchairs.