Nothing About Me Without Knowing Me

There’s a phrase – “Nothing about me without me” – that is used frequently in the disability rights movement. It is a means to combat the tendency in the “helping” professions to proclaim what is “best” for a person with a disability, while those making the choices are not disabled and have not found out the wishes of the disabled person. In other words, any decision about a person with a disability should, um, involve that person. It might seem very basic, but you would be surprised.

Parents of an adult with Down’s Syndrome speak with social service types about their child’s future, setting up such arrangements as what group home that adult will live in. Nobody asks the adult if they want to live with only members of the same gender or what neighborhood they might prefer. Legislators are writing new laws about how at-home assistance will work for people with disabilities, but there is not one disabled person involved in the process. My local public transit authority is making some drastic changes to routes, and while people with disabilities will be impacted by the alterations, they haven’t as of yet actually sought or even been open to the input of blind people.

The good news is that “Nothing about me without me” has made a lot of progress over the years.

With all this in mind, I was thinking about how people make judgments about me and my life without actually knowing me. They see blind person and think things like “Her life must be hard,” “She must not be able to enjoy TV,” or “She can’t possibly do X.” This, as you all know, drives me nuts.

When, through another’s words or actions, I encounter this directly, I can address the misconception the person has created. It would be even better if I could derail the process before it comes to that point.

Can the phrase “Nothing about me without knowing me” become popular? I want to know if just hearing that phrase makes sense to people.

One thought on “Nothing About Me Without Knowing Me

  1. This makes total sense, and thanks for explaining it. Making decisions on someone’s behalf without consulting them about it is pretty disrespectful, even if the disrespect is not intended. People just need to be told, because once it’s explained it’s obvious.

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