Monday, December 3, 2012

How the UN Wants to Change My Life: Special Needs Siblings and the UNCRPD

Brittany Barden is a former employee of Generation Joshua and member of our Leadership Corps. She lives in Colorado Springs, CO, where she spends time helping care for her special needs sister, Alyssa. She blogs about “Growing Up Special” at, where she desires to connect, encourage, and educate special need siblings. She wrote today’s article because she is concerned about the impact that the U.N. Convention on the Rights of Persons with Disabilities would have on her family’s life, especially concerning her sister Alyssa. Please take the time to read this article, and then contact your senators urging them to OPPOSE the UNCRPD during the vote tomorrow.

Since I was just two years old when my special sister Alyssa was born, I cannot remember life without her.  It must have been incredibly boring!  Growing up with a special needs sister is both hilarious and frustrating. She will make us laugh hysterically one moment and make us want to run far, far away the next.   But as anyone who knows the unique joys and challenges of a special child or sibling would tell you, it is more than worth it.

For many years, I have known that I would someday be responsible for my sister's long-term care.  Alyssa and I have always been best buddies... and I knew that one day that would mean living with her, paying her living expenses, figuring out her medical issues, her long-term care, and anything else that might be required.  Sometimes, the thought scares me to death, but it is something I wouldn't change for the world.

Recent US policy changes have made the thought of long-term care of a special needs person even more intimidating, however.  Both my own family and many friends who live with special needs individuals are noticing not-so-pleasant changes.  New health care laws have caused seizure medications to go up hundreds of dollars, and parents are having to fight for the brand version of those medications (generic brands can cause regression and/or unwanted side effects).  Jobs policies result in high unemployment, putting more and more families out of work.  Facing the world without health insurance is scary for any family, but for a special needs family, it can make daily living (obtaining medications, attending crucial doctor appointments) nearly impossible. 

These aren't just stories. These are the real life issues that my family and friends are facing.

Now, another threat looms on the horizon; the UN Convention on the Rights with Persons with Disabilities.  It has been much talked about and debated.  But what threats does this UN Convention pose to the average family with a special needs or disabled person?  Even with all the phone calls I have made to Senators in the last few days, I wasn't exactly sure what the Convention meant for my family.  So I started researching and would like to share just three ways the UN Convention on the Rights of Persons with Disabilities poses grave threats to those you know with special needs... and possibly even to you.

Alyssa with her grandmother at graduation.
Parents vs. School District vs. United Nations

Any friend or family member of a child with special needs who has dealt with the public school system knows the frustration that comes in fighting for the best education--or even a decent education--for special needs kids.  My family has had to get doctor's orders to receive basic services for Alyssa.  Sometimes specialized training is required for teacher's who simply don't know how to handle children with special abilities.

Article 7 of the UN Convention gives the power of ensuring 'all human rights and fundamental freedoms' to the 'State.'  While human rights and freedoms are fantastic and vitally important, what this really means is that the state will be given authority that ought to rest with the parents or guardians of special needs individuals.

If a local school district can't ensure the best education for those with special needs, are we really convinced an international organization can do a better job? 

Medical Care: Courts or Caretakers?

Over the years, Alyssa has tried countless medications and treatments in an attempt to reduce seizures and improve her quality of life.  At times, my parents have considered both implants and brain surgery as viable options, though they ultimately decided they were not best for Alyssa's specific situation. 

In these situations, there are bound to be those who disagree.  However, the care for my sister needs to be decided by those who want what is best for her and will bear the (often tedious) day-to-day aspects of whatever treatment is pursued.  Doctors, specialists, and the government might have helpful insights, but they are not the ones who live with the daily impact of difficult medical decisions.

Recently, a US judge has taken it upon himself to make medical decisions for a 32-year old disabled woman, disregarding the opinions of her doctors and guardians.  It is not the only story I have heard of judges attempting to make medical decisions contrary to the will of parents/guardians.

Sadly enough, the UN Convention only strengthens the position of judges like these.  Articles 23 guarantees "reproductive and family planning education" to those with disabilities while Article 25 gives the UN the right to "take all appropriate measures to ensure access for persons with disabilities to health services."

If a parent or guardian disagrees with a particular treatment, who do you think wins; a concerned parent or the UN?

Disabilities Undefined: FAIL.

Perhaps the scariest aspect of the treaty is that in Article 2 (Definitions), the UN fails to define one very basic term: disability.

Where does this leave the rest of us?  Could "disability" be defined in ways that include those with slight learning challenges, children who are overweight, struggle with allergies or asthma, or face some other ailment?  With such a blank check, the UN is given the ability to apply the above-mentioned articles to an ever-growing circle of individuals.

So if you do not live with a special needs person and think this treaty won't impact you... think again.  It requires very little to expand "disability" to include you, your friends, or your family.

What Now?

Come Tuesday (December 3), the Senate is voting on this dangerous UN treaty.  I hope that you can see the vital need to stand up for yourself or your friends with special needs. If that is not convincing enough... I would like to ask you to do me a favor.  For the sake of my sister Alyssa and our family, would you please take ten minutes to call your Senators on our behalf? 

To find your Senator's contact information, go hereIf you would like a brief script of what to say, take a look here.

Ten minutes of your time has the potential to make a world changing impact.  Thank you for standing up for all our freedoms, especially those with special needs or disabilities, and making your voice heard.  Together, we can do this! 

Brittany with her sister Alyssa

For a list of other problems with the UNCRPD, see Dr. Michael Farris' brief article over at the HSLDA website.

No comments:

Post a Comment