I received this letter from an acquaintance :
I have been in Washington DC this week as a personal assistant to a man who uses a wheelchair. I came to collect a paycheck during a time in my life where paychecks have been scarce. I am leaving with some questions answered about who I am and posed with questions about who I want to be in the future.
It has been a difficult time since Devin’s death and in this physical place, I have discovered a wrenching emotional place, a place I have forgotten and had not connected the dots to. It took a return to DC with people from all over the country in a unified voice of defiance to learn the strengths others see in myself.
But I am still weak. I am too weak to finish sentences when trying to explain to strangers why the Community Choice Act affects so many so profoundly. I am too weak to not cry when thinking Devin could have been saved by a bureaucratic system bent on sentencing people in nursing homes to life without choice, without access, without respect or love or dignity, to a life without life. I am not strong enough in this army of the willing.
I have seen hundreds of people, some in wheelchairs, others with visual or audio impairments and still others with varying ability ranges march in 90 degree plus heat (not including Atlantic humidity) march to the White House only to learn Barack Obama lied about the change he said would come.
We wanted choice in the health care reform legislation currently being written. We wanted the scores of people locked in nursing homes without choice to have the simple civil liberty of choice to live in their own homes. We wanted the administration to know this is not merely a matter of policy but of civil liberties denied to people with disabilities but granted to everyone else.
During his campaign, Obama said he would.
President Obama’s legislative staff heard our demands and flat out said no.
He said NO!!!
I saw nearly a hundred people chain themselves to the White House fence. I heard singing and non-violent protest and children with their parents being shown something many people believe ended in the early 70’s: a sacrifice for the better whole in the name of a civil rights movement for a group by a group without their civil liberties. That was Monday. Tuesday I saw an intersection blocked during rush hour traffic and heard about another blockade in another part of the city. We were outside the Capitol on the House of Representatives side; the others were on the Senate side. I saw people arrested and pushed away. The first person was released ten hours later; the last 14 hours later. No meds, no food but what they had between them.
Wednesday I saw something NO ONE has seen since 1990: people in wheelchairs climbing out and climbing up the Capitol stairs on their hands and knees, others on their bellies the best they could. This defiant action was last seen just before the Americans with Disabilities Act was signed. THAT is how important this Community Choice Act is.
I will share with you why this is important to me: as I hand out flyers, I say “It could happen to you, it could happen to me. Free our brothers and sisters locked in the prisons called nursing homes.” It is simple, powerful and quick. And for the positive reaction I get, I too get a reaction, a realization of how this really does impact me.
Before I left Virginia in 2007, Devin, Connie and I searched desperately for personal assistants to replace me. No one stepped up and it came as no surprise because being a PA doesn’t pay, doesn’t come with benefits and the work can be highly personal and challenging.
Working at nursing homes or institutions provided better wages and benefits and scheduled lunches. The horror stories concerning these nursing homes are more rule than exception. Why it pays less to work in a person’s home than a nursing home is the government support and endorsement of nursing homes. Medicaid is built to protect nursing homes and keep patients (prisoners) in them so staff and administrators (guards and wardens) keep their money and what better way to make even more money?
People in their homes cannot compete or attract the quality employee because candidates would rather work in retail or food service because of how much more lucrative it is. And so, when I left Virginia and Connie left for work and Devin stayed at home because no one wanted to work for him who wouldn’t abuse him or support his desire to live and work and play,
I do hold the state responsible, I do hold nursing homes responsible and so should you. When I told people our brothers and sisters are dying in these places, when I heard others say patients come to nursing homes in an ambulance and leave in a hearse, when I heard survivors describe the conditions they lived in, I knew this wasn’t a line. This came from the heart. So does this next request.
HR 1670. This is the bill number concerning the Community Choice Act. It has been in legislation before and has been re-introduced. This act MUST be included in the health care reform package currently being written. It may be finished in a couple of weeks, so please do this NOW!
Health care reform is worthless if this is not included. The new administration has flatly denied the inclusion of this act, so we need Congress to back this up now and that means we need you to contact your Senators and Representative.
We are all a part of this American Community, right now we do not all have equal Choice or rights and we must Act now. Community Choice Act affects us all. 20% of all Americans live with some kind of disability and if lucky, ALL will age into a disability. Soldiers sacrificing limbs, citizens involved in accidents, everyday lives impacted in an instant: we are all impacted by this and tomorrow, you will not have a choice. This bill passes and you will. This is cheaper since it proven to be less burden on the state and federal governments, policy will be improved and most importantly, civil liberties will be ensured to all citizens of this country.
Photo by carf