Thursday, December 2, 2010

Never been anywhere

As I posted in my last entry, I have no health insurance because I was given false information from a Social Security rep (mainly that I wouldn't lose my health care) and the overall response from every agency I have spoken to (Social Security, local Social Services, & a legal agency) has been a unanimous, "That's too bad.  Oh well."

So now I am reapplying for Medicaid.  I got a letter that I need to have a meeting at the local Social Services building.  It's during normal business hours, meaning all my friends work and can't take me.  But I have to get there.

I'm new in the state, disabled, and trying to figure this shit out.  Phone calls ahoy!

The local health center that has a transportation service can't drive me there because it's not a doctor's appointment.

The other local transportation service for the disabled only takes people who have Medicaid cards.

There is a bus I could take from the bottom of my street to a restaurant on the street the building is on.  The buses are handicap friendly.  But I have to get to the bus stop.  From my place it's 0.6 miles to the bus and it will drop me 0.6 miles from the building I need to get to.

For someone in a wheelchair in New England December, that's a fucking long way.  Not to mention the way back would be a very steep hill.  And I don't know if you've ever tried to wheel a chair uphill with two bum shoulders and almost no grip strength in your hands but it's a really sucky way to spend the next 4 hours.

I could take a cab.  With what money?  I'm still on my "continuing rate" from my last residence (an amount totally inaccurate because of a my dolt of a case worker, but that's another, "Oh well") so my monthly benefits are $40 less than my half of the rent for the month.  Forget bills and food.  So cab fare?  For a 20 min ride? Both ways?  I considered calling a cab to take me to bus stop then taking the bus to the next stop and calling another cab to take me the last 0.6 miles but this seems insane.

There is a system in the bus company to help disabled people get to and from the bus stop--if you carry a Medicaid card.

If I was all alone, I don't know what would do.  As it is, I'll be okay--someone is taking me to my appointment.  Not sure who right now but, one of my amazing friends will take off from work to get me there.  I feel pretty awful about it.

I have never been anywhere on my own.  Ever.  It's embarrassing.  I really have no independence.  Never been able to drive anywhere alone and now I can't drive.  Never walked anywhere.  Never taken public transport on my own because I fall, I dislocate, I get too dizzy to see, my arms and hands get too painful to wheel, and I generally need help all the time.  That's hard for me to admit.  I didn't think about it until this whole episode. And it kind of hurts to have that come to the surface.

It's amazing how much applying for help really makes me feel like shit.  Just as Benefit Scrounging Scum wrote in her most recent blog, it's really damn hard to have to, "justify how absolutely, utterly shit you, everything about you and your entire existence is."

But the truth is there is no system for people like us.  They think there is.  We assume there is.  There kind of is, but it's made by people who don't have to use it.  So they miss things.  They don't quite get it right. 

It's really scary to me that I've never been anywhere alone.  Like I'm missing out on some major passage in life.  Like I'm really just this big scared baby--even though I know that it's not true.  I know that I'm a strong person but for some reason those two things--being strong and having no independence--clash in my mind.  


  1. I really really understand what you say here. 'Being strong and no independence' In truth I don't know what to say to make it better apart from I hear you loud and clear.

    Perhaps thats why there are so many disabled in the blogosphere - here we can spread our wings and fly around the world.

    Well apart from me at the moment who has blogging block.

    My thoughts are with you and I send you a very gentle empathetic EDSey virtual hug.

  2. Thanks so much for that. EDSey virtual hugs back!

  3. sending you *a very gentle EDSey virtual hug* as well!