Nothing About Us Without Us – For those who are not familiar, this is the motto of the Disability Rights Movement. We didn’t invent it. It goes back at lest 5 centuries. It means that we should be included in making the decisions that affect us.
We know what is in our own best interest. We can tell you if something is going to work or not. If you want to help, start by asking us what kind of help we need or want rather than guessing or assuming you know.
The people who make decisions for us often get it wrong. Not because they are bad people or don’t care. Simply because they don’t know. Unfortunately, they don’t ask us. They will ask a research company to get information about us. That is not the same as including us.
These companies recruit a minimal amount of people for focus groups and send out surveys to collect information about us. They re well paid – with taxpayer dollars to find out what we think, what we need and how to make things better.
We are not getting compensated for our time, our participation and certainly not for our information and ideas. There is an assumption that we don’t like money, we don’t need money or ? Whatever the assumption is – scrap it and cut out the middleman. If the middleman is a must – hire us.
Don’t stop there. Hire us in every department in every government agency. With us, government agencies would save time, taxpayer money and make sure policies and programs are effective.
When it comes to our children, please listen to us. Please treat us like equal partners in school settings. Please don’t make us sit in chairs designed for a elementary school children, We know you have a conference room. Please do not treat us like we are not people trusting you to care for our children. These days, that is a tall order.
In health care settings, you must include us in decisions about our children’s care, services, habilitation and any other decision that will affect them. Parents are turning to you for help, not replacements. We want information and options to make informed decisions. Not information about the option you chose.
We may not have degrees or experience but we know our children better than a stranger who spent 20 minutes with them. We most likely live with them and if anything goes wrong, we will have to deal with the fallout from decisions made without us.
This concept, idea, philosophy, motto is about inclusion. The same inclusion in Diversity, Equity and Inclusion. The “I” is ours and has been since the Civil Rights movement when Dr. King spoke about inclusion in the workplace for veterans and everyday people with disabilities.
The “I” was also the foundation for the Disability Rights campaign that gave us the ADA. We demanded inclusion, in employment, in schools, in movie theaters and every place that accessible to the public. We wanted it too.
Nothing About Us Without Us –
It is something to consider