Finding our Tribe

When you are young and have a visible disability, like a lost limb, being in a wheelchair, autism or a birth defect like cerebral palsy, cystic fibrosis or one of the syndromes that appear at birth or shortly after, you are expected to look at the world as a place to be conquered, something to fight (and win) your place in.

I have no idea why this is the case. Seems to be that just being and doing what everybody else does is plenty. Sad that most people don’t think the same.  So your everyday life is a struggle to prove yourself and your worth. You simply cannot be accepted for who you are. Somehow you must be ‘better than’ to be part of the tribe.

But wait until you have grey hair and have a disability. Granted, it’s more accepted  because being old is classified as a disability all by itself. I don’t know why, but it is. As we get frail, we usually need more assistance with daily life, but that normally doesn’t happen until we are in our 90’s.

But as soon as we have grey hair, our world changes. Add a mobility problem to that and our invisibility becomes almost complete. Oh, and what we say is disregarded.  In a store, if we can’t find something, first we have to find somebody to ask a question of, it takes longer than it used to. Ya, I know there are fewer people in stores to answer questions, but I betcha you can find one fast than I can.  Asking the store manager to stock something you would like to buy is next to impossible.  In a small town, the local grocery stores don’t carry things that we are used to in big cities like we moved from. Asking for them to carry it is a crapshoot. I have offered to pay for the item ahead of time.  Doesn’t work.

I hire people to do construction at our house. I used to have a construction company, but do the workers listen to me.  What do you think?  I have fired more people than the ones who stay.  Thankfully, I have a couple of guys who do great work and will do things the right way. Car mechanics won't listen to us, most men do not listen to us. For that matter, young women don't either. 

Have you noticed that when you meet someone who shares your disability, you already seem to know them, you wave or smile to acknowledge their presences?  They are part of your tribe already. Motorcycle riders do the same. Used to be when Volkswagens were just on the scene in this country, we all waved at each other. Same tribe.

I belong to my tribe. I earned it long ago and now that I use a scooter, it seems I have to earn it again.