When you live with a disability, there is an element of leading by example, or living by example that comes with the territory. I have noticed a theme in both of my teacher education programs: no one knows what to do with me. My instructors and coordinators have never had to accommodate or assist someone with my specific set of needs. They’re learning from me as much as I am learning from them –I hope.
Before me, they’ve never had to think twice about group activities, or lessons that are based around interactive movement around the class. If I’m in a class of thirty professionals and we have to engage in an activity that involves moving around the room to write on flipchart paper, I’m SOL. If my instructor forgets to incorporate an accommodation (people are only human; my reality is not theirs, they can’t remember everything all the time) it then leaves me to say “Hey, what about me?” I have no problem with flagging down someone to help me, or reminding people that I have to be accommodated for, but it gets tedious and exhausting very quickly.
Being a living example is hard work. No one understands how exhausting it can be to have to educate people on the most basic tenants of your reality at every turn. After a while, it would be nice if people started picking up on things without me having to tell them. I hate the term “trail blazer”, but it’s a moniker that was bestowed upon me years ago and my practical experience has proven to me that I will never be able to shake it off. That’s fine. I’m a trailblazer. But if that’s what I am, then let me do it. It does no good to call me a trailblazer without allowing me to blaze a trail.
I have no problem being a living example as long as the people I encounter actually learn something from my experience, and me, and incorporate it into their perspective going forward. I can’t be an effective example of anything if no one around me pays attention. I don’t want lip service; if you’re going to tell me that I am an eye opener for you, that interacting with me has opened your perspective to things you hadn’t ever considered, then I need to see evidence of that. Don’t tell me that working with me has taught you invaluable lessons about inclusivity and then turn around and create a circumstance fraught with challenges and say “Oh, I didn’t even think about that!” when I bring it to your attention. That isn’t the way it works.
I’m sure that the psychological fatigue that I’m alluding to is a commonality for a lot of people living with disabilities. We’re living in a world that wasn’t designed for us. We have to carve our own path out of the brush everywhere we go and we can only hope that some of it will resonate and not be completely obliterated as soon as we move forward. Leaving a trail of breadcrumbs is useless if they disappear as soon as you drop them. I can’t speak for anyone else who faces this, but I’m getting pretty tired.
Layla Guse Salah