Saturday, December 13, 2014

December is Universal Human Rights Month

The following is from this month's e-newsletter, The Bee's Buzz. You can subscribe HERE.

Whatever it is that you are celebrating this month – may it be a joyful one!

While I do not want to take away from that joy, I do want to bring awareness to a topic which I have personally spent a greater part of this year exploring and debating – Human Rights.

December is Universal Human Rights Month. To most, especially here in the United States where we are home-based, human rights just seem like a challenge that goes relatively unchallenged. The reality of it is that challenge is faced daily, too often by those who are never given the opportunity to stand up to the challenge – children who are given a diagnosis of Hydranencephaly are a part of that community.

The definition of human rights, from the United Nations Officer of the High Commissioner for Human Rights is this:

“the rights inherent to all human beings, whatever our nationality place of residence, sex, national or ethnic origin, colour, religion, language, or any other status. We are equally entitled to our human rights without discrimination. These rights are interrelated, interdependent and indivisible.”

Let me repeat a piece of that “…or ANY OTHER STATUS.”

Further from the UNOHC:

Universal human rights are often expressed and guaranteed by law, in the forms of treaties, customary international law , general principles and other sources of international law. International human rights law lays down obligations of Governments to act in certain ways or to refrain from certain acts, in order to promote and protect human rights and fundamental freedoms of individuals or groups.”

I don’t want to turn this topic in to a debate about right to life versus abortion; in fact, I make a conscious effort to avoid those debates since that is not what our organization is on a mission to challenge. However, our mission is to ensure that EVERY child given a diagnosis of Hydranencephaly is given the opportunity to live the best quality of life possible, to not be given up on with encouragement by medical professionals before being given this opportunity, and to ensure that our families have the information and support they need further ensure their child does not have their basic human rights withheld from them, based upon diagnosis – a diagnosis that, in some cases, changes or becomes medically challenged after birth.

Universal and inalienable, they say…

in·al·ien·a·ble inˈālēənəb(ə)l/ adjective unable to be taken away from or given away by the possessor

“Human rights are inalienable. They should not be taken away, except in specific situations and according to due process. For example, the right to liberty may be restricted if a person is found guilty of a crime by a court of law.”

That does not tell me that a child given a medical diagnosis, should have their rights taken away because of that diagnosis.

Interdependent and indivisible, they say…

“All human rights are indivisible, whether they are civil and political rights, such as the right to life, equality before the law and freedom of expression; economic, social and cultural rights, such as the rights to work, social security and education , or collective rights, such as the rights to development and self-determination, are indivisible, interrelated and interdependent. The improvement of one right facilitates advancement of the others. Likewise, the deprivation of one right adversely affects the others.”

“…such as the RIGHT TO LIFE.”

Encouraging a family to abort a baby based solely upon a diagnosis of Hydranencephaly is a direct violation of that child’s human rights.

Equal and non-discriminatory

As stated in Article 1 of the Universal Declaration of Human Rights: “All human beings are born free and equal in dignity and rights.”

I’m not here to debate when life truly begins either – however, I am going to continue to advocate for parents to not be directed towards aborting a child because they are wrongfully led to believe that their child will live a life of suffering and hopelessness. Rarely does a child with Hydranencephaly suffer through life needlessly, unless that child is given up on by medical care professionals who believe that providing no medical intervention is the best treatment for them – no feeding tubes, no vaccinations, no shunt placements, no treatment for a common cold… literally no intervention, because these little lives because “what is the point in prolonging the inevitable?”

The point is that these are lives that are being given up on far too soon and in the hands of the very people who are sworn to enhance health and protect/save lives: medical professionals.

So, as you gather to celebrate the magic of this holiday season – please consider keeping Global Hydranencephaly Foundation in your hearts as well. Whether through financial giving, volunteering of your time and talents, or through whatever means of support you are able to offer… we appreciate you immensely. We are often battling an uphill struggle, even within the special needs community, for acceptance and advocacy privileges in order to fight for the basic human rights which are said to be inalienable, non-discriminatory, equal and universal. These rights do not fall freely upon the children we aim to provide individualized support to – but just as they have always done, they will keep defying those odds stacked against them and proving the value of their lives in their own communities.

The Office of the High Commissioner for Human Rights (OHCHR) works to offer the best expertise and support to the different human rights monitoring mechanisms in the United Nations system: UN Charter-based bodies, including the Human Rights Council, and bodies created under the international human rights treaties and made up of independent experts mandated to monitor State parties' compliance with their treaty obligations. Most of these bodies receive secretariat support from the Human Rights Council and Treaties Division of the Office of the High Commissioner for Human Rights (OHCHR). Learn more at

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