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.