The United States Constitution was created to help protect American citizens from unjust persecution. Our country was founded on the belief that people matter, and that people deserved to have a say... not only in how they were governed, but in how they lived their lives. Our country was founded on the belief that we had a right not only to our lives, but to liberty, and even the pursuit of happiness. I have read the constitution and understand how it was designed to help protect my rights and freedoms.
Until about nine months ago, I used to believe that a piece of paper, my integrity, and a desire to do the right thing was enough to protect my rights. In an ideal world maybe it would have been, but we do not live in an ideal world. If we did, then I would not have been slandered for trying to protect my own liabilities and telling the truth, and people who are capable of living out in the community with the right services available to them, would not be living and dying in nursing homes and other institutions against their will.
Across our country people are having their rights violated, not because they did anything wrong, or because they are weak and vulnerable...but rather because we are weak and vulnerable and too often, if it is not happening personally directly to us...we turn and walk away....thankful we are not them.
But if we do not stand up for them now,
Who can we expect to stand up for us tomorrow?
Yesterday, I went to a nursing home because some of the residents asked me to come. It could have been any nursing home across the country. But this particular nursing home has a new administrator that is enacting new policies.
Until two months ago, residents who were able, could sign themselves out and go where they chose. Now they are not allowed to leave the property without someone else signing them out. Doors that used to be unlocked are now locked, and two weeks after the new policy required residence who used wheelchairs to stay on the property was enacted, key punch alarm systems were added to the doors...and of course no resident is allowed to have the code.
All of this is pretty frightening because the residents did not have any input on these policies. They weren't given an opportunity to discuss the situation before the policies were put in effect. They had no warning whatsoever. One day they were able to go to K-mart by themselves and the next day they couldn't leave the parking lot.
But it is even more frightening, because when I went there, I didn't see a bunch of old people whose minds and bodies had deteriorated to the point where living on their own would be impossible. What I saw was young people with disabilities that could without question live out in the community successfully if the supports and services they needed were available to them.
I saw people that were cognitively aware that new policies being forced upon them by a new company and administration were a violation of their constitutional rights... and I saw some people be brave enough to say so... and others that were so afraid of repercussions that they preferred to stay quiet.
I saw people who were afraid of what the how the administrators might retaliate against them if they caused too much trouble....and rocked the boat too much... and I wondered, as a nation how can we allow this sort of thing to continue to happen not just to the people who are elderly, and people with disabilities, but to ourselves?
Because there are not six degrees of separation between any one of us and a nursing home...there is only one....
One car accident, one stroke, one seizure, one soldier's war wounds, one life changing event....that is all it takes....one instant.....only one degree of separation between "US" and "THEM"
One day you are going to college, working at a law firm, raising kids, and going to the movies with friends....and the next....
Well....that depends on whether we are going to allow these types of injustices to continue or if we are going to demand that people have the rights to live their own lives to the best of their abilities.
In today's world we have the technologies needed for people with disabilities not only to live independently, but for them to be contributing members of society. Most of the people I met did not really need to be in a nursing home. In fact, if they lived in a state other then Indiana, they might not be in a nursing home.
The problem in Indiana is that the people who are supposed to be advocating for 'us' people with disabilities, are too busy advocating for themselves and too afraid of their personal financial repercussions..... if they rock the boat too much and actually advocate for the rights and services people with disabilities need.
The state of Indiana puts no money into independent living, and the Centers for Independent Living that do exist are grossly underfunded. So instead of truly advocating for rights and services for people with disabilities in Indiana CIL directors find themselves in a state encouraged cat and dog fight for an ever decreasing pool of funds.
The Indiana Statewide Independent Living Council (ICOIL) is supposed to be listening to people with disabilities and then advocating with the state for change. Instead, they are writing "Codes of conduct" that violate constitutional rights, and calling the police on people who are asking for ADA accommodations.
The council is supposed to be the leader in Independent Living in Indiana, but instead they are being used as a tool of suppression.
Our 'leaders' are not listening to us, but people with disabilities in Indiana are asking to have their voices heard. We are asking for real systemic change and real leaders that will not be afraid to demand that the services which already should be in place ... actually be put in place.
I used to think that a piece of paper, my personal integrity, and a desire to do the right thing would protect my rights....
Now all I can say is whether it is the US Constitution, the ADA, or ICOIL bylaws.... I do not wish to be empowered anymore on paper, if it is not going to translate into reality.