“Nothing about us without us” is not just a slogan. It is a guidepost, 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. We see many outside the disability community coming to an understanding of this direct statement.
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. It is true, however, that there is new respect being shown to people with disabilities and accessibility needs and it is because of the strategic competence of advocates across many fronts. The growth of the disability community in size and recognized political power is lending credence to our newfound respect.
“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. Nowhere is this being more and more accepted than in the Information Technology (IT) world. The business, government, and Nonprofit sectors are fast coming to this understanding and beginning to include people with disabilities in their planning, testing and implementation of new IT goods and services.
In the past business and government officials use people with disabilities like props to make a point, but seldom included us in the actual planning or negotiations when it came down to it. We see that changing. They see that they are stronger with us than without us.
Nothing about us without us is being taken seriously. Whether we are working professionals in the policy field or a person with a disability trying to manage our own lives, we support each other by putting a stake in the ground and saying this far and no further, we will not abandon this position. Others now get it and are beginning to respect our positions.
Nothing about us without us is becoming 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 is often the first and last thing learned, remembered and included at all advocacy points.
We, professional policy advocates, are no longer being locked out after we have used our organizational contacts to reveal an issue or open a door to discussing it. Persons with disabilities are insisting on being a part of every discussion that holds sway over their lives and finding respect for that position in many places.
At all levels, we are no longer allowing ourselves to be used or perceived as props or pawns. Yes, this cultural shift is happening slowly, but it is happening.
Across IT and many other areas in the business, government and nonprofit sectors nothing about people with disabilities is being considered, debated or planned without the full participation of all those concerned. Public officials and corporate officers are no longer allowing such a thing because they recognize that it would be 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. This is being recognized more and more so to the advocates I say keep going things are changing.