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Thursday, July 26, 2012

Looks Great!...On The Surface (i.e. What You See is NOT Always What You Get)

The Big Buzz in the Disability Community is the UN Convention on the Rights of Persons with Disabilities. On the surface, this is a GREAT list of societal attributes to aspire to. Who would publicly admit, or even debate, that they don't agree with the general principles of the convention? They describe a level of humanity and dignity that everyone deserves.
(a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
(b) Non-discrimination;
(c) Full and effective participation and inclusion in society;
(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
(e) Equality of opportunity;
(f) Accessibility;
(g) Equality between men and women;
(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

I certainly want to see this for all disabled people!  And as the parent to a severely handicapped child, I want the USA to aspire to all of these principles! The problem is, that isn't the issue, or the debate!  The USA is already leaps and bounds above other countries of the world in providing disability rights to its citizens. Our grand-daddy of disability laws is the Americans with Disabilities Act. Then there is the Assistive Technology Act .  Our Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act are essential for the amount of inclusion and resources that families with disabled children have in an educational setting - much more than anywhere else. The Architectural Barriers Act specifies design requirements for new and remodeled buildings. Until you travel internationally with a wheel chair, you just cannot appreciate how access friendly most of our buildings are.  In fact, if you need more evidence that the USA already "gets it", then this US Department of Justice Guide to Disability Rights Laws may help inform you of just how far we've come. 

Are we perfect? Of course not. There is plenty of room for improvement! But listening to my many international friends with disabled children, we have been paving the way for disability rights long before the UN took up the fight.  We do not need the UN to direct us in this path.

So what exactly is the problem?
I was going to list a bunch of issues and directly relate them back to the Convention details, but there are some organizations out there who have already done this.  Here are some links you can check out to get more info on the topic:

The article, Protecting the Rights of Parents and their Children, by Karen and Rick Santorum, does an excellent job of summarizing many of the issues I personally have with the convention. 

But even beyond their points (that I totally agree with) on disabled children, homeschoolers, and our God-given rights as parents, I have two other issues.

  1. I just don't understand why any US citizen would want or feel obligated to bow to a governing body that we did not vote for nor has our country in their best interests. It is not a democracy to allow a foreign body the authority to compel our conformance to regulations written by UN bureaucrats. Paragraphs 10, 23, and 25 of the treaty are so broadly written that they might even be interpreted to affect right-to-life issues. 
  2. Who is the UN's Health "arm" that defines policies and standards for worldwide healthcare issues? Not who, but WHO - World Health Organization. :-)  From their website: WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.  Not many people will *get* this point because it directly relates to those with children internationally defined as "lethal anomalies".  This subject is near and dear to me, as my daughter's condition is one of the so-called "lethal anomalies". (Good thing she doesn't know this!!) On page 43 of the WHO manual entitled Primary Health Care Approaches for Prevention and Control of Congenital and Genetic Disorders, the "options for best possible care in common congenital disorders" defined for trisomy 18 is... palliative care (surprise! surprise!).  Please note that this is the only option listed for trisomy 18.  And that protects my daughter's disability!  And if you do some digging (and WHO does not make it easy to find these documents, most references are accidentally found on other medical or related websites), you will find more disturbing references regarding those with severe cognitive disabilities.  And, as far as I am concerned, ANY (health-related) conventions created by the UN will implicitly follow the policies set forth by WHO as implied by their definition.  

Maybe I just got lucky? After all, my daughter DID go home on just Hospice / Palliative Care at the age of 6 days old, mostly because we were told that trisomy 18 children just don't live. Well, after seeing her fight and her will to stay here despite such severe apnea episodes around the clock that we nick-named her "Blue Belle" as she set off her apnea monitor constantly, we took her off hospice and went back to the hospital at 6 weeks of age. She surely would have died in a few more weeks as the stress of no sleep and inability to breathe slowly deprived her organs of oxygen and weakened her body despite her fierce fighting spirit. And even though the hospital did start all kinds of tests to determine the problem (which was defined as central apnea before any testing had even begun - just because that's what doctors are told - trisomy kids die from central apnea and/or heart conditions), we were still told it would be better not to pursue interventions.  Once a simple full sleep study showed that she had severe OBSTRUCTIVE APNEA, and not central apnea, we were able to gain medical support and quickly move to address her apnea through a trach to stabilize her. She is now a relatively healthy 3 year old (despite her delays) with full trisomy 18.  Her prognosis is unknown because she has defied the lethal anomaly / incompatible with life label.  She is Rebekah, a loved child.  On the surface, she is see as Trisomy 18.

So I leave you with the thought that what you see (on the surface) is not always what you get - neither with the UN Convention on the Rights of Persons with Disabilities, nor with Trisomy 18 and my daughter. 

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