Guest Post: The Deal with Disability, Claiming Our Lives

Guest Post by Eva Sweeney
In the 1970’s, the women’s liberation movement pushed for women to stand up for themselves. The leaders told women to demand higher pay, more equality in their relationships, and more control over their bodies. This stance was not easy for some women because they were brought up- and society reinforced them- to be quiet, passive, complacent people. However, because so many women stood up, both on a small scale (to their employers, family, and partners), and on a much larger scale (by demanding equal rights, marching, boycotting, and speaking publicly), great strides for women’s equality were made. Pay increased, there were safe birth control options, and more laws were made to protect women from violence and rape.
I feel, for the disabled movement, we desperately need people with disabilities to echo the women’s movement. The people who spear-headed the independent living movement (such as Ed Roberts) in the 70’s followed the women’s movement as a template. Sadly, the majority of people with disabilities today have gone back to being quiet. In this entry, I will only discuss people with physical disabilities.This is not because I think people with cognitive disabilities are less capable of running their own lives, but because there are more variables that go into what type of care a person needs. With a solely physical disability, the needs are only physical.
What would happen if people with disabilities stood up and took direct action to improve our lives? Able-bodied people, state organizations, attendants, and even family members would view people with disabilities as more capable and as the adults that we are.
The reasons for people with disabilities to keep quiet are very understandable. If a person with a disability stands up to those with power, they become a “trouble maker”. This label might lead to loss of care, being kicked out of your housing, and being subjected to physical, sexual, and psychological abuse.
More and a bio from Eva after the jump.

Aaron Shelborne, who is non-verbal, describes the abuse he suffered at his group home in an independent living video. “I’m afraid when I eat with [one of the staff at the group home], I need my food cut smaller but they don’t cut it up small enough, so I’m afraid that I’ll choke. And they don’t listen, they don’t try and communicate. Sometimes I’ll skip meals because I’m afraid of choking. I’ve skipped meals for two days before…. I’m frustrated because I’m treated like a piece of meat.” One completely understands why, in this type of environment, he’d rather go without eating than try fruitlessly again to communicate with them or complain to their superiors. It’s a system that can tear you down and that why it is so great that he speaks out in the video. I commend Aaron for having the courage to speak out publicly, especially because he risked a lot so that others may learn. It would create a domino effect if more people spoke out this way.
I think it is very dangerous to keep quiet on a small scale. Keeping quiet leads to having decisions made for you and being labeled as “bad” if you show disagreement. It also reinforces the notion that people with disabilities need to be “taken care of” because if you don’t express your opinion, people will just think you’re agreeing with whatever they choose for you. People are more apt to speak for you if you don’t speak up for yourself (in whatever way you communicate). Discussing how your aides can help you better, having a conversation when someone is not doing something to your liking, being proactive about employment, and taking responsibility for managing your life are ways you can stand up for yourself in your own environment. That is not to say that you shouldn’t ever ask for help or feel that you can depend on anyone. It should be on your terms, not your parents, partner, coordinator, or social worker’s terms. Also going to rallies, writing letters, demanding services, and getting involved politically are some ways you can aide in getting more rights for people with disabilities on the larger scale.
I feel that if people with disabilities were more outspoken the whole world would open up to us. Attendants would treat us as whole people, not just a disability or “a piece of meat”. Educational opportunities would open up. Group homes would get extraordinarily better. And career options would be many. Similarly to the strides that the women’s movement made, people with disabilities would better their own lives. It won’t be easy and I know people will fight us to go back to our passive selves. But the end result will be so much better and it will continue to get better for future generations.
Eva Sweeney is a 26-year-old college graduate. She majored in gender studies. She recently started The Deal with Disability which gives accounts of her daily life as a person with Cerebral Palsy. Her other hobbies are photography, creative writing, and painting.