Last week, New York Times reporter, Danny Hakim discovered the unmistakable pattern of a crime -- the suspicious death of Jonathan Carey, a series of questionable actors who were close to the deceased at the time of his death, a string of denials by those close to the scene, refusals by those same actors to speak on the record, and a medical report that points to foul play. What may have shocked readers however, is that the crime was not discovered in an underworld mob family or in a drug cartel but among the State of New York's caregivers for people with intellectual disabilities.
Did the State of New York kill Jonathan Carey?
Probably. Carey was a 14-year-old with autism who was under the care of the State. The likely perpetrator was an employee of the state. The denials are coming from leaders in the state. The outrageous likelihood is that the State did kill Jonathan Carey. And the even more stunning reality is that such a crime against a person with intellectual disability is far from rare around the world.
Last week, the World Health Organization (WHO) confirmed that New York is just the tip of the iceberg. After 30 years of bypassing the health of people with disabilities, the WHO has now reported what has been obvious to people with intellectual disabilities around the world: people with disabilities are an enormous and growing population and their care and support is in crisis. The medical profession is ill equipped to care for them, governments are largely ignoring them, and most interventions designed to help promote public health and education fail to reach them. In most developing countries, care is abominable. Jonathan Carey's tragic death from neglect and mistreatment is almost certainly being repeated daily around the world.
How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity. In recent months, the eyes of the world have been mesmerized by courageous activists in the Arab world as they seek to validate their own dignity in the face of oppressive regimes. They have deployed novel tools -- Twitter, Facebook, and other social media -- to carry out a new kind of social revolution: a Dignity Revolution. The most compelling message of those protests wasn't about technology or even about political parties or economics. It was the sign held by a single Libyan man carrying his homemade sign reading, "Ana Rajul;" in English, "I am a man." He had caught and was spreading the dignity virus.
I wish I had his name so I could make him an honored guest at the next stop on the Dignity Revolution, the largest gathering of people with intellectual disabilities in the world, the Special Olympics World Games in Athens, beginning July 25th. There, 7,500 people of all ages from nearly 180 countries will return to the home of the ancient Olympics to compete in sports. But make no mistake. They are also coming with an unmistakable determination to lead a dignity revolution all their own -- to attract government leaders, health care professionals, educators, sports organizations, educators and perhaps most importantly, average citizens of every age and color to their own global movement. Their goal is the most difficult of all revolutionary goals: to change people's attitudes, to open people's hearts.
But nothing less is sufficient. Changing laws and rules is necessary but not sufficient. Desegregating spaces or organizations has never been an adequate response to fear and discrimination. Adopting conventions and improving funding formulas has never been enough to change the way people think and feel. For those who seek dignity, governments and their structures are often an obstacle but they are rarely the totality of the solution. The real engine of acceptance and dignity is your neighbor, your classmate, your colleague at work. Governments can't force them to think more openly or to see dignity more universally.
The real source of Jonathan Carey's death is us -- all of us who have considered him and his fellow human beings with intellectual challenges to be less deserving of dignity. The real source of the world's most powerful revolt against that long and painful history of indignity is the voice of empowered people with intellectual disabilities. They aren't as likely to have as many articulate representatives as other groups -- or a sophisticated social media infrastructure behind them, but they each proclaim "Ana Rajul." They have open hearts, courage in their attempt to be seen, and most stunningly, a magnetic authenticity. Theirs is a dignity revolution unlike others, destined to reshape not just the laws of nations, but the hearts of people.
If the world listens, tragedies like Jonathan Carey's death will become less likely in the years ahead. Joining this dignity revolution would be the only reasonable way to pay our respects to his short and undignified life.
Anthony Lake: Special Olympics 2011: Including the Most Excluded
Seems to me that if you take one you'll get the other, whether it is fair or not.
Accommodation is a good thing but I just can't buy the argument that not enough has been done. The bathrooms I now have to wait in line for used to be multi- stalled, but renovated to ADA specs, so only one person at a time ...even if just to use the sink. I'm not minding that fact but realize the hardship placed on business to renovate and example of how much has been done since ADA.
I know it sounds cold, but money IS an object (otherwise, why are so many healthy children's lives being destroyed). Far too many resources go for the oldest infirm and the severely disabled and severely disabled are saved with Herculean efforts.
As a mother, if I bore a child that was profoundly disabled, I would believe the moral choice would be to allow that child to die humanely. I could never feel right about keeping a child alive for 20 years unable to walk, toilet, eat, and requiring multiple surgeries, nurses and 24/7 care.
It's wrong. If there were unlimited resources and we were saving healthy children, then I'd have another view. It is misplaced compassion.
My 13-year-old daughter, who is reading all this over my shoulder, points out that people like you only want to live in a perfect bubble with no unpleasant experiences. My daughter is a significantly better person than you will ever be, with your twisted view of who is valuable and who isn't.
You are intellectually dishonest. And you dig low to think the point of the bathroom renovations was my waiting or not, when I made it clear it was simply an example of what has been done at owners expense to the argument not enough has been done.
And I also made it very clear that diasbled or wheelchair bound was not the issue, but the severely disabled kept alive with Heroic measures at enormous expense.
It is immoral so get off your pristine, high horse and have some moral courage to look at the situation.
Now I volunteer at my former elementary school as a Battle of the Books coach. The first meeting of every year, I go over the school rules and the competition rules. I always end the meeting by imparting my own single Personal Rule. I do not allow the insult "retard" or "retarded" in my practice space. Students are allowed one strike because they're young and forgetful. But the second time, either the student goes or I do. Then I tell them about my past and how RIGHT HERE IN THIS VERY SCHOOL my peers routinely bullied me for having a "retarded" mother. Most of them don't know the word is hurtful. Some of them hear their parents use it. But they're all moved by my story and if I can get them to stop and think about their words in my presence, maybe they will learn to stop and think, period.
The focus needs to be on ability and how best to maximize that for everyone.
you are all correct !!!!!...society has stigmitized people with disabilities !!!!!... please don't get me wrong...i'm not crying in my beer, so to speak, but it does make me angry when so-called "normal" people do not/will not/cannot see the world through the eyes of people with disabilities. all of my life, i've had to "adapt" to the "normal" world; it hasn't been easy for me to so, but i've done it to my satisfaction.
since i'm older now, i have to make a few changes that i've sworn i'd never do (a wheelchair on a sometimes basis, a bath seat, and lift chair). my knee joints are shot, and i'm a bit shakey, but i'm not giving up !!!! i admire you three for what you've said, and YGB, i admire you in particular for what you've done for your parents and for your teachings !!!!!
you're all three fanned !!!!!!!
i was always told, "you can be anything you want to be, and you can do anything you want to do". when it can time to do and be, i was told, "oh, you can't do that, you'll hurt yourself". whet i've accomplished, i've done myself. i never had "accomodations" while i was in school. i went to a Jr. College and was told, "we aren't mandated to accomodate you". i'm going go to Southern Illinois University Carbondale to persue my Masters Degree in Rehabilitation Administration. my plan is to work to help pass laws to bring respect and understanding for people with any disabilities visible, or invisible.
http://www.youtube.com/watch?v=dcuqM1LEi5c
The WI union protesters disrupting a day meant to honor and reward those in the Special Olympics, is but one example how they do not support nor honor a dignity revolution.
An excellent post!