From Michigan With Love

Dear Drag Syndrome performers,

I am deeply sorry you were recently barred from performing at the Tanglefoot building in Grand Rapids, Michigan. The decision to deny you the freedom to perform reflects one man’s ignorance regarding the needs and abilities of adults with disabilities. He could have accepted your invitation to speak with you and learn how truly capable you are but he declined. His loss.

Admittedly, when I first learned about this unfortunate situation it made me angry. It made me so angry that my stomach turned, my face got hot, and all the swear words spewed from my mouth! Anger isn’t what Drag Syndrome and your fans are about though so, it’s time I get with the program.

I am a performer with a disability who lives and performs in Michigan. I have worked with Jill and Chris of DisArt and appreciate the opportunities they create for Artists with disabilities, like you and me. Their reputation and integrity is impeccable.

Furthermore, the notion that you bombshells would allow yourselves to be exploited is absurd. I am not an expert on Down Syndrome but I know that everyone, even those with the same disability, is different. We all have different strengths, weaknesses, and passions. Clearly, you all have the ability to express yourselves as you choose and I am here to support all of you in all the ways that I can.

Thank you for unapologetically being your authentic selves. Drag is an art form that pre-dates Shakespeare and you have perfectly personalized it because that is what Artists do…and I love it! I have seen numerous drag shows over the years and really look forward to one day seeing Drag Syndrome on stage.

It is sad that not everyone is open to appreciating what you have to offer. It is sad for them because they are truly missing out on experiencing all the dimensions of who you all are. Please don’t let a few closed-minds and some hate mail stop you from putting your bold and sassy selves out there because there are plenty of fans that love you.

Your friend in Michigan,

Jane Hash aka Lady Jane The Mini-Mermaid

The Affordable Care Act Helped Us

On behalf of UHCAN Ohio, I am collecting stories from real people who are benefiting or have benefitted from the Affordable Care Act. You will only be identified by your first name and last initial when your story is published. 

I am an experienced Blogger and healthcare advocate who will convey your story with the utmost respect and dignity. Please send your story to me at: hashitoutwithjane@gmail.com

Please indicate if you would like me to mail you a release form, for permission to use your story, or email you the form in digital format. I can only use your story if I have a signed 'permission slip' from you.

Thank you for your advocacy!

Jane Hash

Jane Hash - MyCare Consumer Advocate Co-Chair

Dear Readers,

It is no secret that I have been fiercely vocal on social media, regarding the sloppy and irresponsible manner in which the MyCare Ohio program has been implemented. Numerous elderly and disabled citizens are suffering in ways that are unimaginable. 

The population that is most affected by the MyCare Ohio crisis, are those who are no stranger to abuse and neglect because of their physical and/or intellectual vulnerabilities. Many are afraid and unable to advocate for themselves for fear of further mistreatment. Instead of reaching out to Social Workers, Case Managers, or representatives of the Managed Care Plans, these victims of MyCare Ohio are reaching out to me...Jane Hash.

In case you are wondering why these folks would come to me for help, just glance at this blog's description there to your right. When I said, "I am the politically incorrect voice of the unheard" I meant it. These victims are about to be heard...loud and clear.

Allow me to reintroduce myself... My name is Jane Hash and I am the MyCare Consumer Advocate Co-Chair for the East Central Region. I have volunteered to take on this role to make sure all of the heartbreaking and compelling personal stories that have been shared with me, are heard by those who have the power to make the needed changes.

Below is a brief description of our plan of action. I encourage you to share this information because we still are unclear as to how many people are being affected. Also, if you are a dual-eligible who is being affected by MyCare Ohio, please look below and join the conference call that is scheduled for your area. Consumers - this is your opportunity, your safe place, to share your story. I will go to battle for you but I need to know from you EXACTLY what you want me to fight for.

In solidarity,

Jane Hash

Date: Friday, October 31st

Times: (1:00pm -2:00pm Northwest, Northeast and Northeast Central), (2:00pm – 3:00pm East Central and West Central); and (3:00pm – 4:00pm Central and Southwest)

Not sure what region you're in? Click here and scroll down to map.

The call-in number (free call) and participant code is: 
(877) 366-0711 Participant code - 53257144#

What you can do:

• ·       Let your voice be heard
• ·     Share your story
• ·     Help provide a feedback loop the Plan, State and Federal Government
• ·     Want a say in your treatment delivery
• ·     Want to ensure you are getting your medical equipment
• ·     Happy or frustrated with MyCare Ohio

  RSVP - For more information or to join the coalition contact:

John Arnold

OCVIC, Project Coordinator

jarnold@uhcanohio.org

614-456-0060 x 237

The "Mind The Gap" Campaign Gains Momentum!!

It wasn't long ago that I had the pleasure of interviewing Michele Kaplan regarding her "Mind The Gap" campaign.  It is very encouraging to see that this very serious issue is gaining media support!  One woman really can make a difference in the lives of many as long as she has a solid support team.  Be part of the team by sharing this post!!  

Episode 34 of "HASH IT OUT WITH JANE" on KUSF-IN-EXILE - Mind The Gap

Michele Kaplan

Listen Here

This week on "HASH IT OUT WITH JANE" on KUSF-IN-EXILE I had the pleasure of interviewing a fellow Disability Rights Activist who isn't afraid of being the catalyst for positive change.  Michele Kaplan's most current undertaking is known as the "Mind The Gap" project.  You can show Ms. Kaplan your support and help insure the safety of people with disabilities who ride the subway in NYC by signing her online petition.

More on Michele Kaplan

• Occupy on Wheels
• Occupy on Wheels the song
• MIND THE GAP petition that you want to sign
• On the subway

Music Play List

• The Offspring - Stuff is Messed Up
• Michael Franti - I Know I'm Not Alone
• Sheryl Crow - Everyday Is a Winding Road

Episode 29 of "HASH ITOUT WITH JANE" on KUSF-IN-EXILE - Modern Revolutionary series part 2 of 3

LISTEN HERE

This week I aired part-one of my interview with ADAPT representative, Sarah Watkins.  She gives us first-hand information about what it's like when 74 people in power-wheelchairs get arrested for committing acts of Civil Disobedience...with the support of actor, Noah Wyle.

Sarah Watkins leads the protest!

Music Playlist

• Tracy Chapman - Talkin bout a revolution
• Tom Waits - What Keeps Mankind Alive
• Tom Petty - I Won't Back Down

Episode 17 of “HASH IT OUT WITH JANE” on KUSF-IN-EXILE - featuring Mark Romoser

This episode was exceptionally interesting for me to put together because it was my first time interviewing / having a conversation with an Autistic person.  Mark Romoser is a brilliant man who is a real asset to the Autism Tolerance 'movement.'  This show has definitely changed my perception of Autism!

Mark Romoser

Important Links

• Starabella
• Autism Society of America
• Autism Self Advocacy Network
• Take Them a Meal
• George Hodgins

Music Playlist

• Talking Heads - Don't worry about the government
• Matisyahu - We will walk
• Michael Franti - Tolerance
• Johnny Nash - I can see clearly now

LISTEN HERE

A Day of Advocacy

On Tuesday, February 7th I participated in a Focus Group to offer my input regarding Medicaid services in Ohio.  This group was open to Medicaid Consumers who depend on a variety of services such as but not limited to; assisted living, Home Health Aides, and home delivered meals.


I found this meeting to be hopeful, entertaining, enlightening, sad, and frustrating.  Let's start with the frustrating stuff so I can hopefully end this blog entry on a positive note.

• The room this meeting was held in was way too small.  Attendees had to call ahead to register so the organizers had to have an idea of how many people to expect.  Also, when you invite a bunch of people with varying degrees of physical and non-physical disabilities somewhere, then you really need to consider the fact that many of them may be using mobility devices like wheelchairs, walkers, or dogs.  All of these things take up space!  A man with multiple disabilities almost fell on me because he had to step over a Service Dog.  If my Aide did not have lightening quick reflexes, I would not be typing this blog entry right now.
• I did not care for the way the information was presented to those with non-physical disabilities.  It was obvious that many of them lacked the intellectual capacity to process the information like the rest of us which caused them to react in a scared, panic-like fashion.  I believe they deserve to be informed and should have an opportunity to voice their complaints and desires but it should be done in a way that is not traumatic for them.  They require and deserve a bit more compassion than what they got yesterday.

Ok, now the sad stuff.

• I met an older lady who is afraid to ask her Home Health Aide to cook food for her, run the vacuum or much of anything else because her previous Home Health Aide was so abusive to her that she'd rather compromise her needs than give her new non-abusive Home Health Aide a reason to quit.
• A middle-aged man who is very unsteady on his feet, even with his cane, is repeatedly denied Home Health Aide services because he is considered "too independent."  By his appearance, I would say that he most likely has not had a proper bathing in a while.  I can't imagine how hard and dangerous it would be for him to get in and out of a shower by himself.

Let's move on to enlightenment!

• I was very pleased to hear that I'm not the only person with a disability in Ohio who has wonderful Home Health Aides!  Those of us who have these great care-givers all have the ability and the drive to advocate for ourselves and assemble our own support system.

Now for the amusing stuff!

• Attendees continued to enter the room for about the first 10 minutes of the meeting.  My eyes and attention were focused on the group's Facilitator who was speaking.  When I felt someone sniffing my leg from under the table, I almost screamed!  Fortunately I looked first, because it was just a curious Service Dog.
• The previously mentioned Service Dog was on duty with a nice, older lady who's eyes were 'looking' in two different directions.  My excellent deductive reasoning skills lead me to understand that this lady is blind.  I soon realized that everyone does not have deductive reasoning skills.  When literature was being passed around the room, the woman seated next to the blind lady tried to pass her the literature.  The blind lady did not take the literature because she could not see that something was being passed to her.  So, do you think that waving the literature around like a maniac would force the blind lady to see?  As entertaining as it was, I had to intervene and kindly handle the situation.
• My audio recording device was better than the Facilitator's.
• There were a few other situations where I had to contain my laughter because it was just too inappropriate to express amusement.  However, I will say this.  More than once I thought of that old movie called "FREAKS."  I say this in a complimentary fashion.

There were moments of hopefulness.

• At intermission / break-time, a professional looking woman approached me with an interesting proposition.  She said that a new talk show is being developed, she's going to be the Hostess and she'd like me to be one of her guests.  I'll keep you all updated as that tale unfolds.
• At the close of the day long meeting, the Medicaid representative asked me to stay.  I was a bit nervous about this because my sources have informed me that I am on a "difficult Consumer" list.  The representative was very nice though and addressed an issue I brought up earlier in the meeting which was overlooked at the time.  The issue is known in the Health Care world as "Colorado Norms."  Colorado Norms provides what I call a "dirty loop-hole."  Medicaid/Medicare can honestly say that by adopting Colorado Norms, life sustaining care will not get taken away from those who depend on it.  However, Colorado Norms does in fact regulate this care.  Example #1 Transfers using a Hoyer lift may not exceed 15 minutes.   Example #2 Bathing may not exceed 30 minutes, once per day.  I made it very clear to this Medicaid representative that the people with disabilities in Ohio will not tollerate the implementation of Colorado Norms.  I also gave him my blog address and suggested he look around and see what happens when the State of Ohio does not protect the rights of its people with disabilities.

In closing, thank you LEAP of Cleveland, Ohio for hosting this event.  The Facilitator said that this group of Consumers from Northeast Ohio was the largest and the most enthusiastic.  That's just how we roll...  

Peace!

Episode 8 of “HASH IT OUT WITH JANE” on KUSF-IN-EXILE - featuring Tiffiny Carlson

Hi there, everyone!  This, in my humble opinion, was a great episode.  Tiffiny Carlson was a super fun guest who I could have kept talking to forever!  Due to time constraints I did have to cut a few minutes off the interview.  We did manage to cover a variety of very helpful and slightly taboo topics because SOMEBODY HAS TO...and that is how we roll!  In the near future I will be Tiffiny's guest on her podcast, "NO FREE RIDES."  Stay tuned to KUSF-IN-EXILE!

Tiffiny Carlson

• Tiffiny Carlson bio
• No Free Rides
• Beauty Ability
• SCI Life
• Marie Claire
• Devotee
• Self-Defense

PLAY LIST

• Prince - Pussy Control
• Cyndi Lauper - Girls Just Wanna Have Fun

LISTEN HERE

Episode 7 of “HASH IT OUT WITH JANE” on KUSF-IN-EXILE

Every episode gets better than the last!!  After 7 weeks I think I finally know what I'm doing. 


Links to topics & related info

• Dwarf Tossing
• Little People of America
• The Elephant Man
• The Enigma
• Freak
• Cirque du Womp
• Lucent Dossier Experience
• Th' Bones & Roses Circus Sideshow
• Dubstep Circus

Playlist

• SHORT PEOPLE - RANDY NEWMAN
• DEVO - FREEDOM OF CHOICE
• SOFT CELL - DEX DWARF
• ANASTACIA - FREAK OF NATURE

LISTEN HERE

Episode 6 of “HASH IT OUT WITH JANE” on KUSF-IN-EXILE

It was really exciting putting this episode together because it was my first international interview and my first time using Skype to conduct an interview!!!  I think it was a success, don't you?  Paul Caune, thanks for being my first!

PAUL CAUNE

Here is a list of resources if you'd like to further educate yourself on the issues discussed during this episode.  Thanks for listening to “HASH IT OUT WITH JANE” on KUSF-IN-EXILE!!!!

• American's with Disabilities Act (ADA)
• Civil Rights Now
• Woodlands School (content on this sight may be disturbing)
• ADAPT
• Willowbrook State School  (content on this sight may be disturbing)
• Care Giver Support
• Muscular Dystrophy 

Music Playlist

• MASSIVE ATTACK – BE GRATEFUL FOR WHAT YOU GOT
• THE FOUR TOPS - I CAN'T HELP MYSELF
• THE 5 6 7 8'S - WOO HOO

LISTEN HERE

BRING ON 2012!!!!

I want to wish all of you a safe, happy, and prosperous New Year!!!!  

Thank you for reading my blog and sharing it with others.

Taken for a fucking joy ride - PART ONE

In Ohio, Medicaid will pay an 'approved' transportation service to take consumers to medical appointments.  The 'approved' companies generally specialize in transporting people with disabilities and senior citizens.  I used the services of the same transportation company for nearly 15 years.  Their customer service was awesome!  (FYI - I have a physical disability and use a wheelchair.)

About two years ago, one of their drivers who I was unfamiliar with came to take me to a dentist appointment.  It was snowing that day, but not bad...just a normal winter day in northeast Ohio.  The driver clung to the steering wheel, white-knuckle style, and repeated "I'm not used to driving in the snow.  I'll try my best to get you there though."  ARE YOU FUCKING KIDDING ME????  My dentist was an hour away.  By the time we got about 5 miles from my house, I was so freaked out that I made her turn around and take me home.  She scared the bajeezus out of me!

As soon as I got home I called the company and told them what I just told you.  I spoke directly with the supervisor, who we'll call "Mo."  Mo was a driver when I started using the service and she had taken me to many appointments and has a firm understanding of how medically fragile I am.  She apologized and said she wouldn't send her again.  LIE!!

Guess who showed up to take me to my next appointment?  If your guess was Captain White-Knuckle, you guessed right!  Against my better judgement, I got in the van...  I regretted that decision almost immediately.  While she was loading me into the van, she told me that it stalled on her way to get me.  Since the transport facility was near-by, I asked her if we should switch vehicles before we hit the highway.  She said that was not necessary.  Guess what happend about 5 minutes after we got on the highway???  The van died.  The company had to bring us another wheelchair-van.  My Home Health Aide who was 6 months pregnant had to carry my 40lb ass down the highway to the second van, which was parked ridiculously far away.

I finally made it to my appointment.  Little did I know that the worst was yet to come.  She got us lost!  She pulled into a gas station to turn around and backed the van into a gas pump!!!  The impact was so hard that my pregnant HHA came up off the seat.  Fortunately, my wheelchair was tied down properly or I would have gone flying.  I thought I had whip-lash or broke a bone.  As I mentioned somewhere, I am medically fragile.  She refused to call 911.  She refused to get out of the vehicle to asses any damages.  She just fled the scene.  I felt kidnapped.  I was terrified and physically hurt.

She took me home.  I called Mo.  The only thing Mo had to say was "No one else has ever complained about her."  She didn't even ask me if I was ok.  I was in shock and hurt, physically and emotionally.  I'd known Mo half my life and trusted her and the company with my safety.

The majority of the people that this company transports are mentally retarded or otherwise cognitively impaired!  THEY CAN'T TELL ON PEOPLE WHO HURT THEM OR PUT THEM IN DANGER!!!!

People with disabilities are easily and often subject to abuse If you don't believe me, read this.

This is your tax dollars at work.  Medicaid paid this company, to pay this woman to terrorize and injure me.  I consider this Medicaid fraud.  Do you?

The Gimp Avenger Intro

Nobody likes a complainer, especially me.  However, I believe that if you have a legitimate complaint then you should do something about it instead of being a Debby Downer.  Sometimes this can get very complicated.  Generally speaking, there is an established protocol to address/deal with complaints.  What do you do if your complaints are ignored though?  What if by ignoring your complaint, a protected class of people are put at risk for abuse and/or injury?  I know what I am going to do.  I'm going to write a blog...and with the help of my friends, make a documentary.

My 'Shit List' consists of doctors, lawyers, companies who provide services to people with disabilities, a few of my own relatives, and the average shmuck on the street.

I'm under 3 feet tall and only weigh 40lbs.  Underestimating my strength and intelligence would be a very big mistake.