Disability Blues

I've decided to blog about my experience of life as a disabled person.  maybe just for 30 days or so-- keep track of my experiences....

What a bad week!  I spent most of this week trying to arrange transportation to go to my friend's son's birthday party.  Normally I can drive, but I've been suffering from vertigo on top of my usual disabilites.

It's hard to continually feel left out of the world.  Last week I decided that several retreats I used to go to are just not accessible enough for me to attend again this year.

If accessibility were the norm and we did not need to fight so hard every step of the way, perhaps I'd be less burned out.

If friends were more compassionate...

If, if, if...

If I weren't often in pain...

I'm turning 50 now.  I've been a paraplegic since age 19.  My generally optimistic nature is getting eroded.  Yesterday I spent an hour tracking down the police to ticket a car that was parked in the crosshatch and I couldn't get into my ramped vehicle.

Today after all the preparations for my friend's son's bday, they all changed the plans yet again.

I get it that they can be spontaneous and I need to plan.  They don't need to think of me. But I need to think ahead.  I need to conserve my energy.  That means making choices to skip things even though I already feel left out.

Having a disability is hard.  It used to be easier when we were younger.  We played basketball and danced and I even managed a career.

Now it just feels hard.  At some point it is just wearying.

I have worked so hard on access.  It is discouraging

to see how few people care about it or really even understand it.

On a listserve that I am they are debating whether they need to include elevators in their new co-housing development.  I'm shocked that this discussion is even taking place.   from the perspective of the able-bodied people, it's an expense.  One guy went so far as to say that he had a friend in a wheelchair and she just dragged herself up the stairs and it was unrealistic for people with disabilities to expect things to be accessible.  Turn back the clock.  Go sit in the back of the bus.  Get dragged up the stairs.  how degrading.  what is wrong with people.

Why do disabled people always have to lead the charge?  

Who will do it if we don't?

I don't know.  I just know I can't always be the one to try to make things work out.