Five-Star Disability

Hi there readers,

I have often been asked to write about the challenges that I face on any given day.

I face a lot of different challenges, as faithful readers should know.  I have a five star disability which includes: cerebellum ataxia, areflexia, pes cavus, optic atrophy, and sensorneural hearing loss.  I also have nerve damage, and something called prolapse.  I’ll get into that in a minute.

The last two I’ve know about for well over 25 years, while the others was wondering about, but not sure until proven recently.

Anyways, challenges on any given day are always different!  How can I elaborate on one particular challenge, when the other is also peculiar!

One of the most frustrating aspects of my life is my hearing loss.  I cannot hear when people are talking nor can I hear environment sounds.  I miss a great deal of information because of this.  Not just when people are chatting around me, but also on the street, in hospital waiting rooms, in libraries, in buildings etc.  I always try to make sure that I have the resources available (I mean intervenors), but often I’m left dangling!

Take for example: recently my son had an ophthmalogist appointment at a very busy hospital.  They are notorious for making people wait two to six hours for an appointment.  I was lucky to have an intervenor from 930 to 12 that day.  My son’s appointment was at 8.  So, I expected that we would still be there in the waiting room at 930, and finally seen by the doctor by 11 or so.  Perfect set up with resources available right?

Yet, we were called in at 8:29!  The assessment was done by 8:47!  We were waiting for the subway at 8:56!  That was the fastest ever appointment we have had, hands down!

I felt frustrated because I was left out.  I couldn’t understand the Doctor, what was she testing him for?  I could not support my son, because the lights kept going on and off (which is the case with ophthmalogy.  With an intervenor I would have switched to tactile ASL and still been involved.  The biggest issue was that I had no idea what they were talking about! Is that acceptable to you?  Was it expected that the child of ten answer medical questions or the parent?

If your child is in the doctors office, you want to know exactly what is happening?  Its common sense!

Now this hospital knows I am Deaf-Blind, yet a few years back I requested that they do not provide interpreters for me.  Because, most times the interpreter is not appropriately dressed (black shirt), nor is she comfortable working with a person with a vision loss (instead of signing small space in front of chest, they sign all over and very fast!).  So, I use intervenors who know about Deaf-Blind interpreting.  But, today was a sham because we were done and all I had was a report, who was the person who examined my kid?  What was being done specifically. I wasn’t wasn’t in the “know” of things.

In a way, probably this lack of information made the appointment go much faster.  But I feel that with the resources available, an intervenor, I could fully understand and appreciate what is happening!

I will revert to using interpreters  at this hospital.

Enough said!

Good day!