In several different connections recently, I have heard speakers, with and without disabilities, talk about how fear can control how we think and act. So I’ve been thinking about fear. In the disability community there are lots of fears that put a damper on our independence; for instance, many of us do not have much of a backup plan to cover our personal care needs. We depend on caretakers, or on provider agencies, to watch our backs and cover for us—and then, sooner or later, a personal care emergency arrives. Even the best caretakers have unexpected needs, and provider agencies have difficulties finding replacements on short notice. So in our everyday lives, how often do we feel that we do not have control over situations related to our disabilities? And how many times does feeling out of control create a feeling of inadequacy? Living with the risks of dependency on others can create fear and what the psychologists call “learned helplessness” in us.
What one of the speakers said was that we should not allow ourselves to fall into a cycle of learned helplessness, that we should step out of it by becoming angry: “It’s their inadequacy, not ours. Don’t take responsibility, and don’t feel guilty!” Of course, the feeling of inadequacy was the root of the independent living movement. What Ed Roberts taught us is that we are adequate and deserving and that we should not feel guilty, that it is not our fault when something in life fails. It is our responsibility to take control. Ed Roberts also talked about anger, saying that getting angry at the education system was how he got his education. He knew he was not inadequate; the system was inadequate. Also, he knew that if he directed his anger and the anger of his fellow students with disablities, it could motivate them to make changes in the education system. He said, “Anger is a powerful energy. We don’t need to suppress or get over our anger, we need to channel it into making change for the greater good. We need to make sure that we don’t turn our anger in on ourselves or our loved ones, but focus it on removing obstacles and making things happen.” People with disabilities are less likely to be highly educated than are people without disabilities, yet the disability community is one of the highest educated minorities. That’s thanks to Ed Roberts and his ability to direct his anger toward changing access in higher education. As schools and colleges open later this month, let’s be there. And if we have to, let’s get angry! Let’s fulfill our needs and desires and work for the greater good.
The front-page article on direct-support professionals is a step in the right direction. If our PCAs are viewed as professionals and are asked to provide or develop the credentials for a professional position, their wages could increase to reflect professional status and compare with other professions carrying the same responsibility. If legislation governing personal care attendants and home health aides is strengthened, it could even help legislators themselves by the time they need PCAs. Maybe we should remind them that if they don’t want to go into a nursing home, they will want plenty of competent, appropriately compensated direct-support professionals to live in their communities.
Of course legislators, and the governor, are the subject of elections that are just around the corner. As we do for each election, Access Press recently sent out a survey asking the candidates to introduce themselves and explain their thoughts on government’s responsibility to the disabled and aging. We delivered the survey the first week in July. One candidate from a major party responded without a follow-up call and actually had a campaign worker hand-deliver the 700-word response. Several others responded within the first week and were very eager to address the concerns of the disability community. In the second and third week in July, I spent time calling and asking for responses. As you will see in their comments, some of the candidates see the disability community as a serious voting block and want our votes. The nonre-spondents, on the other hand, seemed to be telling us—well, you decide for yourself what they may be telling us. Please read the responses and cast an informed vote in the September 12th primary.