Disability 101: Fighting for Independence
October 3, 2010
I cling fiercely to my independence. I can be demanding about it. I can
be obnoxious about it. I can be offensive about it.
Those who are offended challenge me to behave in a more socially acceptable fashion. Those who care for me encourage me to let my guard down, worried that I’m setting a standard for myself that’s difficult to maintain.
Many people without a disability simply don’t get it. They don’t understand that the stakes are high. I’m fighting for my life here.
People with disabilities have a choice to make: fight for every bit of independence we can maintain or allow ourselves to sink into a world where there are no choices and we lose our sense of self.
My MS is a degenerative disability. Fortunately, at the moment I am stable. Always hovering over my shoulder is the specter of my symptoms getting worse and my life changing all over again.
Many people with MS wind up in nursing homes. We are living in a society that prefers to spend huge amounts of money providing services to people with disabilities in nursing homes, even though it would cost significantly less money to provide services in a community setting. Medicaid pays for nursing homes. Medicaid is not required to pay for services that would allow people with disabilities to remain in their homes. (Can you say “institutionalization”?) ADAPT is currently working to pass the Community Choice Act which would allow people with disabilities to receive services in their homes and which would actually save Medicaid a great deal of money.
Now I’m in a race. Which will happen first, the Community Choice Act or my MS
I live in terror of nursing homes. I am single. I have two adult children but if you think they are going to be able to afford the services
I am likely to need in the future, guess again. No matter how much money they earn in their careers, I will become more expensive than they can afford.
Community Choice Act or my MS getting worse?
I have never been in a nursing home, but I know people who have. Their stories terrify me. Stories about nursing home attendants pulling residents out of their beds and leaving them in wheelchairs all night so the attendants didn’t have to be bothered to check on the residents during the night. Stories about residents who did not behave in an approved fashion being restrained in their beds and tied up like animals.
In every nursing home, residents are expected to check their identity at the door. Residents are expected to forego personal choices, to forego personal opinions, yield to the schedule and do as they are told. It’s too bad if you don’t like the lousy food or if you don’t want to turn your lights out early at night. If you have a need at a time that doesn’t fit into the schedule, too bad.
Community Choice Act or my MS getting worse? I will fight for my independence. I will keep taking care of myself and earning my own paycheck just as long as I possibly can. Bear in mind I am not afraid of my disability. I’m afraid of our society’s expectation that people with severe disabilities must be in a nursing home.
Today you are eager to help me by pushing my wheelchair or opening the door. Forget that. I’ll push my own chair and open my own door. If you really want to help me, pass the Community Choice Act. For more information: http://www.adapt.org/cca.php .