What sorts of Day for Persons with Disabilities?

3 December 2009 – Well here we are on December 3rd, The International Day for Persons with Disabilities. The United Nations and The World Health Organization have set this year’s goals as making the Millennium Development Goals inclusive. In New York, U.N. Secretary-General Ban Ki-moon announced the appointment of Stevie Wonder as a 11th United Nations Messenger of Peace, even though they were forced to evacuate the building during Wonder’s acceptance speech.

Here in Canada tabled the Convention on the Rights of Persons with Disabilities, today. This is a step forward, but it also stands in sharp contrast to the realities for many in Canada today. The Convention promises:

Article 10 – Right to life

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

Article 25 – Health

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

  1. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
  2. Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
  3. Provide these health services as close as possible to people’s own communities, including in rural areas;
  4. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
  5. Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
  6. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Similar promises were made to children with disabilities two decades earlier. So why on earth are on this celebration of the International Day for Persons with Disabilities does anyone have to read the Bankruptcy or Justice? story below on this blog? If, as the Farlows seem to believe, their child died as a result of medical discrimination and possibly of a deliberate drug overdose, why is there so little interest in uncovering the truth? If it is not true, why not answer all their questions fully and honestly?

The simple reality is that there is an enormous chasm between the promises made to children and adults with disabilities in human rights documents, and the realities of our current health care system.


2 thoughts on “What sorts of Day for Persons with Disabilities?

  1. Great post Dick,

    Indeed, there is an enormous chasm between ratified rights and the current reality of our medical system.

    In one of our court hearings, (Annie Farlow) I was going on about the Convention of the Rights of the Child and the obligation of state parties to provide and protect those rights. Here we are, alleging the most egregious of denials, the denial of life, and we are in a legal system that appoints such little value to the life of a disabled child with a shortened life span that there isn’t a lawyer in the country that would take it on contingency.

    The Judge interrupted me and asked what the Convention on the Rights of the Child had to do with the situation. I find that statement to be very telling.

    I have made a great effort to understand the system from the front line perspective. I asked one intensive care physician who writes on the topic of futility and priority setting, “What about Human Rights?” The idea of human rights was brushed aside quickly and easily with his response, “Oh yes, but they are not absolute.”.

    An even more insightful conversation was with a physician who told me that her hospital had developed guidelines that restrict admission from children with “certain cognitive disabilities.” I blurted, “But that’s a human rights violation!” and the response was, “I know and I don’t agree with it.”

    I would conclude that those in the system realize that they are violating rights, but that is just the way it is. It seems to be what the system expects or demands as beds are continually cut and physicians are left to make choices.

    My position is that if our country is so impoverished that we create policies that discriminate from certain people on the basis of disability (not medical futility), then we have to be very open about the development and implementation of them at the very least.

    The existence of Human Rights and the atrocities that led to the creation of the Universal Declaration of Human Rights (a beautiful document) cannot be abandoned in incremental denials as we experienced.

    The significance of our issue is that we believe that our rights to be informed and to make informed decisions were blatantly violated in a covert manner. To us, a major line that was crossed. If this right is taken from loving, omnipresent parent who simply want to provide medical treatment irrespective of disability and who have a very good relationship with the doctors, then who is next?

    It is certain that genetic conditions such as trisomy 13/18 are the leading edge of genetic discrimination. As long as infants with these conditions are treated appropriately, in accordance to existing health care laws, then all other newborns with conditions related to disability will also be treated appropriately.

    We have discovered government-produced training materials that dehumanize infants with malformations by placing them next to a monster and a mermaid. We have discovered a government document that specifically excludes certain life-saving at-home equipment to infants in need IF they have a pre-existing condition. (how many pre-existing conditions can a newborn have?)

    Finally we have discovered that there is no place to complain or shed light on these discoveries. We believe they are blatant violations of ratified conventions….but who cares?

  2. Correct Barb! The Courts have much to learn; it is most disturbing that a Judge cannot bridge the importance of the Convention on the Rights of the Child with the value of a human life!

    Here, a solicitor for Alberta Justice hired by Children’s Services, referred to a disabled child during a Law Society Appeal as, “IT”. That sort of ignorance stems directly from an individual who is representative of our Justice System! I am deeply ashamed and tremendously hurt by the dehumanizing moniker utilized!

    On top of this, the woman publicly indicated within the Alberta Fatality Inquiry Schedule that the child had a medical condition that was not viable with life rather than the true diagnosis. Physicians and geneticists had to intervene in order to erase the misinformation. Furthermore, what other lasting damage was relayed by the statement: Families diagnosed in utero are susceptible to limiting information and the commentary could very well be catalyst in choosing to end a pregnancy!

    One would think that we live in an era of better understanding towards differences, embracing diversity, but instead an ugliness continues to rear its ignorant head! The Panel of Lawyers seemed to take little note of the indiscretion, let alone penalize the author speaking! THIS is who represents the law?? This is who the Public depends upon speaking for vulnerable persons whose voices are already silenced! This is WHO is speaking for the dead! Perhaps the Courts should be better subject to studies in ethics prior to practice!

    Persons with disability are Constitutionally assured the right to the delivery of quality health provision, but reality finds that the cost of access may be at the expense of relinquishing guardianship of a child to secure it! This is a widespread area of misconception amongst social workers who have been trained to only consider maintaining children with disability in out of home placements rather than supporting natural families. This stems from archaic views towards persons with disability who were often hidden from Society! Although newer Legislation negates the Practice, unless front-line workers are educated, continuation of repression will continue!

    Elderly folks, too, face a range of dilemmas if they are subject to relocation within Canada. For instance, with the death of an elderly spouse requiring a move to live near remaining relatives: Continuation of health supports ceases for 3 months until the cross-over health care transfers. This leaves persons with significant disability isolated without any form of PCA unless they are wealthy enough to hire privately! Imagine, an 85 year old who can barely walk, now without needed services such as meal preparation or bath assistance! Yet, Legislation has not yet delved far enough into real life situations to feasibly meet these lapses!

    So, what is the ‘regular’ person to do? We can either sit back – much the same as any person who chooses to turn a blind eye to abusive situations without reporting – or, we must choose to be a voice, identify the deficits, raise suggestions based upon experience and persist. At what cost? Beyond the financial strains associated with loss of time that might be devoted to family and career, so too does one suddenly need to be subject to invasion of privacy, mental & physical exhaustion and other health concerns.

    As you state, Barb, locating a legal advisor that is willing and able to handle obstacles that coincide with challenging large bodies – be these Government, Hospital or Institutions – even upon 100% contingency is literally impossible!

    Those in position of Authority have unlimited funds and resources, including time to allot and even one is successful, the Institution needs only to appeal and alter the law to seek a win! As one solicitor aptly; albeit, ineloquently put the task, “Like pissing in the wind against a fire hose”.

    In Alberta, the life of a child is minimally valued. If one is able to prove culpability in death, the cap ‘award’ set is $75 k. This makes any case impossible for even a reputable lawyer to take on because the Court fees alone will be more than recovery! Mix in disability next to the child’s name and automatically, one is led to the conclusion that death is an expected outcome! It does not seem to matter that neglect to treat health factored in as the trigger!

    And still, I care. I am not a loud voice, but I am persistent and when it comes to the rights of vulnerable loved ones, I am not easily silenced. My daughter mattered, you daughter mattered. These were children who were cherished and who offered a world of love to others. Experience has led us to be more vocal because we intuitively understand that it is the right thing to do.

    Violation of rights is a choice and appears to be one that those with the greatest authority/funds has the ability to decide! This is certainly undermining the entire premise of ethical consideration within the Convention on the Rights of the Child!

    (\ — /)
    ( \()/ )
    ( / \ ) TAKE THIS LITTLE ANGEL ^j^

    Velvet Martin,
    Administrator for Tetrasomy 18p Canada

    “Samantha’s Syndrome”

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