"Nothing about us, without us"

I have a particular pet peeve.


Okay, maybe it’s more than a pet peeve; it’s a downright irritant. I am painfully intolerant of programs that are meant to create awareness about disability, or meant to be inclusive of people with disabilities, or educational programs about the challenges disabled people face that do not include the voices of people with disabilities. I was with a group of people this week, all of whom had some connection or another to programs that promote the inclusion of people with disabilities.


Image is of a modern office with desks chairs and laptops.
Inclusion in the Work Place

One of the organizers of one of the programs was speaking to some of the other members of the group about a young leadership group that is under her purview that had wanted to include people with disabilities, but wanted some training around what they needed to do or know. Out of the corner of my ear I heard the woman proudly explain that she had one of the service providers (who is not disabled) come to the group to explain the challenges that people with disabilities face. Seriously?! I couldn’t help myself; this conversation is a real trigger for me so I had to open my big mouth and ask if I might make a suggestion. Knowing that I have strong opinions about most things disability-related, she timidly said yes, to which I said: "wouldn’t it be a great idea to have a disabled person actually speaking about the challenges of having a disability?"

Her response to me was “that’s a great idea”. It is a great idea, but here is the problem; first, she and I have had this conversation before so it wasn’t actually a new idea; and second, why did it take me suggesting it to someone who is in the disability field and is planning programs? Nothing about us without us, which is a rallying cry of disabled people, means don’t plan things about us or for us without us. It means don’t talk about challenges, accessibility, barriers to employment without including us in the conversation, and it means when you are talking about or planning for the inclusion of people with disabilities, don’t exclude people with disabilities. I’m not saying you shouldn’t have non-disabled people who are allies included in these conversations, but for G-D sake why would you ask someone who is not disabled, who has never actually faced the challenges of a disability, to represent the disabled community or speak about the challenges disabled people face when we are perfectly able to speak for ourselves?


If the only person you hear from at programs about inclusion of people with disabilities or the challenges of accessibility etc. is an able-bodied person who provides services to disabled people, a parent or sibling of someone who is disabled, then you definitely didn’t get the real representation.


Certainly, there are able bodied experts in the field who definitely “get it”: They have studied and interacted with disabled people, are strong advocates and have good information to impart. They may have told you about accessibility, programs that support individuals with disabilities and raised the issue of inclusion and other issues that confront our population. But they haven’t lived the experience. And frankly, if those allies are true allies, they too would insist on including the voices of people with the lived experience. After all, my friends who are allies and advocates in the disability world who are not disabled have never experienced what I experience when trying to access inaccessible web sites, managing at conferences, traveling, or even just getting to the bathroom in unfamiliar places. They really don’t have the experience and understanding of why blind people don’t mingle -and that is the least of it!

Programs that don’t include the voices of those with the lived experience of disability are missing the point, and frankly are perpetuating assumptions about disability and disabled people. And the audiences of these programs are being short changed. In truth, when organizers of programs meant to promote disability awareness don’t have disabled individuals in the planning and the actual program, they are perpetuating the misconception that we, disabled people, need to be taken care of or worse, that our voices don’t matter.

Our voices do matter; our voices make an impact! Hearing from me and from others who are disabled how lack of accessibility impacts our lives at work, school, or in other arenas of life, when people hear directly from us how attitudes, implied bias and low expectations of people with disabilities creates huge barriers in our lives, that is the only authentic information, and at the very least should be included alongside the non-disabled professionals or family members. Otherwise, it’s like hearing from a man who watched the birth of his child trying to describe labor pains.

When you plan your next program, conference or training, include the voices of those with the lived experience in the entire process—planning, implementation, and execution. The result will be a richer, more impactful, and relevant presentation that may not only raise awareness, but may influence long held assumptions and stigmas about people with disabilities. It may lead to real change.

If you really believe in the abilities of people with disabilities, if you really want to support the equality and inclusion of people with disabilities, if you really want to impact negative assumptions about disability, then nothing about us without us just makes sense. It should be your rallying cry and a matter of policy.