Independence and Disability Rights

This week had many of us reflecting on independence, particularly the independence of our nation. July is also disability pride month, and independence has been both a rallying cry and a point of disagreement in the disability community.

There are two main schools of thought around independence and disability. For decades, the goal of independent living has been one of the main objectives of some disability activists. But many others have pointed out that complete independence is not attainable or even desired by all disabled adults. By making independence a sort of holy grail, we disregard the wide variety of preferences and needs people with disabilities may have.

It boils down to the fact that we are using the term in different ways. Two of the top definitions of independent in most dictionaries are 1) not requiring or relying on others or 2) not subject to control by others. These are very different concepts.

If we use the first definition, being independent would entail living alone, without support. Taken to its extreme, one would need to be living in some off-grid cabin in the woods, hunting and farming for food and clothing to be truly independent. But even a more moderate interpretation does not leave room for the many ways an adult might rely on others—roommates to help pay rent, a family member offering to babysit, the neighbor kid to mow the lawn.

The second definition, “not subject to control by others,” seems to be the idea of independence that most of us embrace. It expands the idea of successful independence to allow for the need for support—whether that is family or friends or paid caregivers. The real goal is the ability to control one’s life and make one’s own decisions, even with input from trusted advisors.

Due to the ambiguity that can come with the term “independent,” many of us prefer to use the term “autonomy” when speaking of the values of the disability rights movement. It is still a very meaningful concept; for much of the history of our independent nation, people with disabilities have not had much say in their own lives. Physicians, educators, the government, and family members have controlled housing, treatment options, job opportunities, financial status, and even the bodies of people with disabilities.

The results of this external control have been abysmal. We’ve housed people in institutions where they were mistreated and abused. We’ve created a 15-20% employment rate. We’ve subjected people with disabilities to physical and sexual abuse, poverty, and exploitation. We’ve forced sterilization and withheld medical treatment.

When we look at the outcomes, how can we continue to rationalize limiting the autonomy of people with disabilities? They couldn’t possibly do worse than the professionals who’ve called the shots for centuries.

So, this month, we celebrate autonomy for all disabled adults. Independent or not, we all have the right to control our own destinies and to Life, Liberty and the pursuit of Happiness in this great nation.