Nothing about us without us is not just a slogan. It is a guide post, a philosophy and greatest of all a rallying battle cry for people with disabilities everywhere. It is not to be trifled with or only given lip service to.
People with disabilities have endured centuries of having their fate decided for them at the policy and personal levels. Many in government and business say they get it, but how many projects, programs or efforts meant to benefit the disabled are led by a person with a disability? I’m not talking about the blind guy you roll out on cue to show how inclusive you are. We must guard against being used that way no matter how much it may cost us personally.
“Nothing about us without us”, means exactly that. No matter how well intentioned it is, any discussion about disability at the policy or personal level that does not include representation at the policy level, or the person whose life is being discussed at the personal level, is insulting, degrading and without real merit.
Government officials often use people with disabilities like props to make a point, but seldom include us in the actual planning or negotiations when it comes down to it. Companies who engage us to guide them and open doors for them often leave us behind when it comes time for the grownups to sit down to discuss the issue raised. Many times, good is done and even millions of dollars are made, but we get the crumbs when it is our need and position that is the cause.
Nothing about us without us needs to be taken seriously. Whether we are working professionals in the policy field or a person with a disability trying to manage our own lives, we need to support each other by putting a stake in the ground and saying this far and no further, we will not abandon this position.
Nothing about us without us must become a contractual obligation at the professional level and all of us who work in the profession need to agree to stand united on this point. Where individuals with disabilities are concerned it needs to be the first and last thing learned, remembered and included at all advocacy points.
We professional policy advocates must not be locked out after we have used our organizational contacts to reveal an issue or open a door to discussing it. Persons with disabilities need to insist on being a part of every discussion that holds sway over their lives. At all levels, we can’t allow ourselves to be used or perceived as props or pawns.
Nothing about us in the disability community should be considered, debated or planned without the full participation of all those concerned. For any public official or corporate officer to allow such a thing is a betrayal of this ideal, but more than that, it is a waste of the knowledge that exists in each person with a disability.
No one is born understanding disability in all its facets. People with disabilities bring a unique level of experience in general and in specific as well. If our help is necessary, then the entire process can’t go forward without us.
Douglas George Towne
Chair/Chief Executive Officer – Access Ready Inc.