Originally published in The Daily Iowan
Sometimes, policies and ideologies look good on paper or in your mind, but don’t translate well into real life. Like, for example, small government, or less government spending on health care.
Because of my disability, there are many daily activities that I cannot accomplish independently. This means that I’ve got a couple of options: I can live at home and have my parents take care of me, I can live in a group home or institution and be taken care of by those who work there, or I can live independently and hire personal care assistants to help me with daily living. The money used to pay these personal-care assistants comes from government-funded programs. To those of you who may believe that the government should either not be involved in such programs or should be spending less money on these programs, take note.
Let’s take the first option. Even before I moved to Iowa City to go to college, I had personal-care assistants help me throughout the week outside of the school day (in which I had a one-on-one helper with me at all times). Those who do not have a disability or are close to someone with a disability that requires intense physical assistance may see this as unneeded, but the reality of the situation is that it is unrealistic to expect parents to be the sole care providers of children with disabilities, especially when this care takes time and requires physical work such as lifting. My parents both have jobs that take up time, as is their right. They also are getting older, which is just a fact of life. We cannot expect the responsibility of being the sole caregiver of someone with a disability to fall on the parents, nor should we expect people with disabilities to be limited to only living with their parents.
The second option would be for me to live in a group home or institution. These are also partially or fully government-funded, depending on the place, but the difference between this and me hiring my own caregivers is a loss of agency. I no longer am choosing where to live or who is taking care of me (pretty severe limitations) all because my physical situation is much different than the average 21-year-old.
Or, I could live independently and hire my own personal care assistants. This is what I am currently doing now and hope to continue to do for the rest of my life. Choosing who assists you with pretty intimate tasks such as going to the bathroom or showering should be a human right.
Someone might say, “But when someone is in the hospital, they do not choose who assists them, they are thankful for the help they receive.” Well, guess what? I’m not in the hospital for a short stint – I’m in this world, disabled as I am, for life. So yeah, I think I have a right to decide who is helping me, and not just be thankful for any help that comes along. The bottom line is this: we should be placing control in the hands of the individual with a disability, not taking control from them.
And yet, supporters of less government involvement or those who are upset that their tax money is being used to help people who “should be able to take care of themselves” are overlooking people with disabilities as a group that deserves and requires independence.
They are overlooking the fact that, according to a 2015 NPR report, if you live in the U.S. and are disabled, you’re twice as likely to be poor than a nondisabled person, and far more likely to be unemployed. These are, of course, two separate issues here — poverty and disability, and government money being used to fund caregivers for people with disability. But they also are one and the same issue, in that they’re about what some may call government “handouts,” and the overwhelming tendency for people to dismiss those with disabilities. But people with disabilities are people. I am a person. We can make significant contributions to society, and our human rights (not “special needs”) cannot be overlooked.