Sunday, June 24, 2018

Accepting limitations is a sign of wisdom, not weakness

Dear Activists with disabilities,
Since disability doesn’t discriminate, we are the cross-section of everything – every religion, political affiliation, ethnicity, sexual-identity, sexual orientation etc…we encompass all of it. Therefore, we feel the impact of more issues than just the ones that are disability specific.
Although we are passionate people who feel very strongly about our individual values, it is important we are mindful of our physical limitations. Some with disabilities are very capable of participating in a demonstration or protest and I fully support them. 
However, some are not physically up to that challenge due to complex medical conditions. So, instead of throwing your medically fragile bodies into the front lines of the many protests going on in our country right now, I urge you to utilize technology instead. There are numerous ways that technology can be used to support the causes that you hold dear.
-       Launch a video campaign - Organize like-minded folks to make a video of themselves expressing their feelings about a specific topic. Then post & share! Partner with an organization that shares your values to help your videos reach more people.
-       Blog – A personal story often packs a greater punch than an actual punch. Spill your guts (figuratively speaking) and blog about why you feel the way you do. If you feel passionately enough to be considering putting your medically fragile body in harms way to make a difference, than I feel you should have the conviction to open up about why you are steadfast in your beliefs.
-       Organize an email campaign – To make it easier for folks to participate, write up a few example letters that can be copy, pasted, and easily modified.
-       Social Media – Tweet. Retweet. Share. Like. Love. Never underestimate the power of sharing information!
Accepting limitations is a sign of wisdom, not weakness. Finding alternative solutions is what disabled people do every day. Stay strong. Never give up. Just make sure you’re still around to celebrate after we cross the finish line.
Nothing About Us Without Us,

Jane Hash aka The Gimp Avenger

Monday, April 23, 2018

Care.com displays lack of care for woman with a disability

On February 2, 2014 I attempted to log into my Care.com account and follow-up with some applicants who had responded to my ad for a Home Health Aide. After a few tries that only led to error messages instead of access to my account, I clicked on their Member Care link and sent them a message to see what the problem was.
Basic Membership to Care.com is free and allows someone seeking a Caregiver to post an ad describing the type of care they need. To actually communicate with a potential Caregiver or utilize any of the other services Care.com offers requires a paid membership, which Medicaid and Medicare do not cover. One month costs $37 or an annual subscription costs $147.
For me, the most appealing feature of Care.com is that members can choose to only communicate with Caregivers who post the results of their criminal background check. This is a huge safeguard that was worth every penny, even though it had to come out of my $800 monthly budget.
On February 3, 2014 Care.com responded to my message alerting them to the fact that I could not log into my account. Here is what they had to say:
Thank you for your email. After researching this issue, we found that you previously had an account that was closed by Care.com.
Unfortunately we are unable to accept your membership. This decision is final and irreversible. No exceptions will be made to these terms.
I was stunned! I thought this had to be a mistake or misunderstanding. I am a healthcare advocate with a disability. What could I have said or done to warrant this extreme action? They must have been hacked, I thought! So, I called them.
As it turns out, Care.com was not hacked. They told me it could take up to a week for my membership fee to be refunded and that I can never have a membership with them again and…here is the kicker…they do not have to tell me why.
I’m a small statured woman who uses a wheelchair. Obviously, I’m no stranger to being disrespected. In fact, the last person I interviewed from Care.com had plenty of disrespectful things to say about my lifestyle. I didn’t cause a ruckus about it though. I just didn’t hire her.
Since Care.com refused to tell me why they revoked my membership, I’m always going to wonder if that judgmental interviewee complained to them about my non-traditional ways. Am I being discriminated against because of my lifestyle? Their website states that their goal is ”…to provide families with as many options as possible so everyone can find the care that best fits their unique needs.”  Why am I being excluded?
Now, let’s fast forward. On April 18, 2018 I attempted to open a new Care.com account because I have moved to a different state and need to assemble a whole new team of Caregivers. My first attempt got an error message. On April 19th I tried again and got another error message.
It’s been four years since we parted ways. Care.com couldn’t possibly be holding a grudge, right? There must really be a problem with their website, right?
Like I did four years ago, I clicked on their Member Care link and sent them a message to see why I was getting an error message. In return, I got this seemingly automated response.
Thank you for contacting us at Care.com.

While we review your submission, we’ve included some general information below about how Care.com can help you find the perfect caregiver.

How does Care.com work?
Care.com is a self-service website where you can find and screen local caregivers and service providers.  With your membership, you can post a job, browse through providers, and contact your preferred candidates when you are ready to begin the screening process.  By accessing background checks, reference checks, and member reviews, you gain a greater sense of the experience and qualifications of your emerging candidates.  The general steps include:
·      Browse caregivers by zip code or post a job to generate applicants for your position
·      Check references and read reviews from other members and previous employers
·      Run background checks and view other safety verifications
·      Narrow down your top candidates for interviews, and hire with confidence
What’s included in the Safety Center?
The Care.com Safety Center offers safety and hiring guides, frequently asked questions, detailed information about our background checks, and other safety articles for your perusal.  These resources help you take full advantage of the screening tools available with your membership, and to make the most informed decisions throughout your search.  If you have any further questions or concerns, you may also browse our Help section.

We hope this helps, and if your specific question was not addressed in this message, we will do our best to respond within 24 hours.
The déjà vu was getting stronger every hour I waited for an answer. By the evening of April 19th my impatience got the best of me and I sent Care.com a Facebook message, asking why I was getting error messages upon trying to open an account, and this is what they had to say…
Jane, after researching this issue, we found that you previously had an account that was closed by Care.com.
Pursuant to the Care.com Privacy Policy and Terms of Use, Care.com is not required to release the specific details as to why an account has been closed.
As a membership-based online community, Care.com reserves the right, in its sole discretion, to remove a member's Care.com membership for any reason or no reason, with or without notice. If we terminate your registration, we have no obligation to notify you of the reason, if any, for your termination.
There was no error. Care.com is still denying my membership for reasons unknown to me. Is this acceptable behavior for a multimillion-dollar company that does business in over a dozen countries? Where is the Customer Service? Where is the compassion? Most importantly, where is the CARE?

If I violated Care.com’s membership rules, it was absolutely an accident or misunderstanding. I feel I deserve a fair trial, so to speak, before I’m handed a lifetime sentence. Instead, their cowardly method of handling this situation will always make me wonder if there are aspects of my life that I need to hide in order to find the kind of care that I need to live in my own home and community.

Thursday, January 12, 2017

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

Tuesday, July 12, 2016

Holy Toledo, Dorothy is a Drag Queen!

Every element of Saturday night was absolutely mesmerizing. My paramour and I visited the Collingwood Arts Center in Toledo, Ohio. Built in 1872, its history is almost too rich to digest. This massive architectural conglomeration has been a school, a library, and a nunnery oh my!

In addition to being a source of inspiration for artists near and far, the center also allows them access to its beautiful theater. The most recent theatrical production to come to life on its skillfully crafted stage (the reason for our visit) was, The Wizard of Odd.

THE STORY

This retelling of an American classic tale maintains the captivating magic of the original story. Directed by Matterz Squidling and Mackenzie Moltov, The Wizard of Odd addresses current social issues in a way that leaves audiences feeling hopeful and uplifted while also questioning, “What the flying monkeys did I just see?” With the perfect blend of sharp wit and silly puns, the script is hilariously clever.



THE CHARACTERS

All the characters we have loved throughout our childhood are represented and re-imagined in a way that will make you fall in love with them all over again…Toto too (Bayard Matty)! Each has a unique request of the great and powerful Wizard of Odd. So, together they make the journey by following the yellow brick road.

When this motley crew of characters finds themselves in a bit of trouble, a new friend comes along to save the day. She is the Queen of the Field Mice (Fibi Eyewalker)! After seeing the things she can do with fire in her mouth, only a fool with a death wish dare question this Queen’s power.

The belle of the ball, without a doubt, was the beloved Dorothy Gale (Pollyanna High-Gloss.) Dressed in traditional Dorothy attire, this actress/female-impersonator is full of surprises. Possessing the naïve charm we would expect, she enchants audiences with her intricate dance number and angelic vocal abilities.

ALL PHOTOS BY ALTERNATIVE NOISE PRODUCTIONS - CLICK TO SEE MORE

THE COSTUMES

Each performer’s costume was a piece of art in itself. Perhaps the two most eye catching of them all were The Wicked Witch of the West (Redrum) and Glenda the Good Witch (Madeleine Belle). These artists handcrafted their own burlesque inspired ensembles. The results are simply jaw dropping.
THE MUSIC

Aside of Dorothy’s rendition of “Over the Rainbow” at the close of the show, all the music was written and produced by Ringmaster Zeb (The Munchkin King & The Odd Head), Velvet Crayon (The Wizard of Odd), and Satori Circus (The Tin man during the Detroit performances). This includes each song performed by The Tin Man (Erik Bang), The Cowardly Lion (Titano Oddfellow), and The Scarecrow (Jelly Boy the Clown).

THE MESSAGE

Without a doubt, the theatrical production of The Wizard of Odd lives up to its name. It is very odd indeed. Though there is some cringe worthy use of sharp objects and acrobatics of Cirque du Soleil caliber, the overall message is quite clear. It may not always be easy. Sometimes it can be rather scary. However, by embracing your authentic self…love wins.

Sunday, January 31, 2016

Jane Hash testifies before the Ohio Medical Marijuana Task Force

I have not yet figured out how to close-caption my videos and I am deeply sorry for that. In an effort to not exclude anyone from hearing what I have to say about cannabis aka marijuana, below the video is the full text of my testimony. 

The two men on the panel representing the task force are Senator Dave Burke and Senator Kenny Yuko.




Hello. My name is Jane Hash and I am a lifelong resident of northeast Ohio. As an advocate for holistic health I have had extensive training through the National Organization of Certified Natural Health Professionals as well as the School of Natural Healing in Utah. My area of specialty is the use of western medicinal plants. I’m now preparing to further my studies at the Trinity School of Natural Health so I can become a Naturopathic Doctor.

In my spare time, I’m a co-founding Director of a nonprofit organization that serves career driven adults with disabilities. In conjunction with another Ohio based organization, I train others with disabilities how to advocate for themselves and for each other, as a team. I’ve also been known to do some motivational speaking at the Richland Correctional Institute.

My seemingly shameless display of self-promotion comes with a purpose. I want you to understand that the reason I am able to accomplish these goals and be a contributing member of our community is because I use Cannabis 1 to 3 times a day…every day.

I was born with a connective tissue disorder called, Osteogenesis Imperfecta (OI). While this condition affects the entire body, the most significant symptom is fragile bones. I had my first few fractures before I was born. From birth until puberty, I had at least one fracture at all times. After puberty, my fracture frequency began to decline dramatically. By my late teens I had endured 200 broken bones.

Generally, I find complaining to be both a waste of energy and a cheap way to gain attention or pity. However, I also believe that I have held back way too much for way too long.

Using the 0 to 10-pain scale, I know nothing less than a 3, which is defined as “Pain is noticeable and distracting, however, you can get used to it and adapt.” In the winter my pain level does not go below a 7, which is defined as “Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships.  Interferes with sleep.”

My body has never responded favorably to pain medication. More than once opiates almost stopped my heart. When I was an infant and had 26 fractures at the same time, the medical community had zero non-life threatening solutions to offer. I spent my first two weeks screaming in pain.

Out of desperation to relieve my suffering my Mother put shots of brandy in my baby bottle. This at least brought me much needed sleep. With alcoholism on both sides of my family, that was not the optimal course of action to take but desperate parents will do anything to relieve their child’s pain. By the time I reached adulthood I was using alcohol to manage my physical pain caused by OI and the emotional pain caused by my life circumstances at the time.

I was becoming an obese, violent, black out drunk…with fragile bones. I will never know the details of how it happened but I awoke from my last black out with fractures and torn ligaments. I knew that I had to stop drinking or I was going to die. That is when I turned to cannabis.

I have always known about cannabis but I did not always have accurate information about it. I didn’t know it can relieve pain and I thought it had to be smoked. Since the leading cause of death among those with OI is respiratory failure, I don’t want to smoke anything.

For the first two years of my relationship with cannabis, I had to figure out how to use it and how to dose it appropriately for my size, without any medical or professional support. During this time I had some scary moments but I learned that 1) the side effects of prescribed painkillers are more dangerous than an overdose of cannabis 2) it is impossible to ingest a lethal dose of cannabis 3) no matter where my pain ranks on the pain scale, a dose of cannabis brings it back down to a 3 and allows me to live my life with minimal discomfort.

When Ohio has medical cannabis available for patients like me, handing me a packet of seeds with permission to plant them will not improve my quality of life. I don’t have the physical ability to grow cannabis myself and I don’t have the space in my home to dedicate to an indoor garden. What would enhance my quality of life is to be able to go to a dispensary and purchase cannabis in an appropriate form and dosage for my body.


Furthermore, according to a report from the US Government Accountability Office earlier this month, most states are struggling to provide coordinated home care services for dual eligibles while adhering to recent US Department of Labor’s guidelines regarding what they call “companion care workers.” The revenue from medical cannabis could provide a solution to this problem by supplementing the wages of non-agency home care nurses and aides. This will require some restructuring of how home care services are currently being delivered but since the model isn’t working anyway, we need to take action to ensure the safety of Ohio’s most vulnerable citizens. Ohio is in a position to teach the rest of the country how to profit financially by being compassionate enough to provide safe and legal medical cannabis to patients who need it. Thank you.


Saturday, May 23, 2015

Cannabis Corporation of Ohio

As I was sitting in the square across from the West Side Market in Cleveland today, a woman with a clipboard approached me. She asked if I was a registered voter and I responded affirmatively. Then she asked if I wanted to sign her petition to legalize marijuana.

In the world of cannabis activism, I’m nowhere near as well known as someone like Willy Nelson. However, love me or hate me, cannabis activists in Ohio know who I am. The fact that she didn’t have a clue was an indication that she is not a true cannabis activist.

Our conversation continued like this…

Me: Do you represent ResponsibleOhio?


Petitioner: “No.”

Me: What organization are you petitioning for?


Petitioner: The Blue Team! (she flashed me her blue fanny pack)

Me: The Blue Team?

Petitioner: Yes

Me: Do you have any literature I could read?

Petitioner: Sure!

She reached into her blue fanny pack and pulled out a full color, glossy brochure that clearly had ResponsibleOhio’s logo all over it. I held the brochure up, pointed to the logo, and explained to her that she does represent ResponsibleOhio. She looked at it rather confused.

Not only is she not a true cannabis activist but, I am not certain that she can read.

Then I started firing questions at her about ResponsibleOhio. She had no answers. However, she did make the mistake of telling me, “If this passes, the government will provide marijuana for anyone who needs it for medical reasons.”

That was my breaking point. I heard myself shout something like, “Have you ever needed the government to provide you with any medical necessities?”

When she could no longer handle my interrogation, she finally said something honest.

Petitioner: I’m just doing this for the money.

Her response reinforces my theory that ResponsibleOhio is working toward being the cannabis corporation of Ohio.

Tuesday, March 24, 2015

Ohio Wages War Against Disabled Citizens and Their Caregivers (part three)

Dear Representative Robert Sprague,

My name is Peggy Cooley. 

I ADAMANTLY oppose the elimination of Independent Providers (IPs).

Peggy & her daughter, Kit
I am the mother and legal guardian of my daughter, Kit, who lives with multiple special needs: Cerebral Palsy ( spastic quadriplegia, cortical blindness and a seizure disorder. Kit is on a DODD waiver and continues to live with me and her father in our home. She is a beautiful "social butterfly" and she shares her joy for life with everyone she encounters. She is currently 23 years old and participates in an active and vital adult activity day program, five days a week, along with 20 other "friends".

Kit feels safe, loved, secure and respected by her five Independent Providers, most of whom have been her caregivers for over a DECADE. These caregivers are like family to us. We love, respect and trust them to care for our child. These wonderful caregivers take Kit out in the community; including meals out at restaurants, trips to the shopping malls, out for walks in the parks, etc. Kit is also friends with other members of her caregivers families. Kit has benefitted in every aspect of her life because these caregivers are a big part of her life. I can't imagine ever losing them or of ever losing the FREEDOM TO CHOSE who works with Kit in our own home.

I can never go back to using an agency and none of Kit's providers will ever go back to working for an agency. Her caregivers worked for years at an agency for the sole purpose of providing care for Kit. I recruited, trained ( a 6 to 8 week process), and did all of the scheduling of hours. They NEVER worked for any other agency client the whole time that they were with the agency. At some point the agency cut their already low wages, became ridiculously intrusive in our home and ignored my requests that they stop taking Kit's vital signs, as there was no order from her doctor that this was necessary. The agency nurses would end up scaring Kit and then she would cry and end up biting her wrists out of frustration. I was told, incorrectly, by the agency that I would lose the ability to bill hours for the aides if I did not allow them to take vital signs. It got to be so stressful for me  that all of our caregivers agreed to go through the process of becoming Independent Providers to reduce the stress I was feeling. I gave the agency notice that this was happening and the agency (Maxim Health Care) tried to extort $5000 dollars from each of them for allegedly being in violation of a "non-solicitation agreement. My husband made a few phone calls and within 72 hours an attorney from a law firm, hired by Maxim, contacted us and his first sentence was " tell us what Maxim needs to do to make this go away."

The white paper written by the Ohio Health Transformation department  was the most disturbing document I have ever read. It was a blatant attack on the 13,000 Independent Providers and came as a total shock to me. IT SCARED ME !!!!!  I was outraged by the contents of this document and I was INSULTED that Governor Kasich and Mr. Moody could ever assume that I would be so naive and uniformed not to see through their scam.!!  This is disgusting and outrageous behavior by the Kasich administration, PLEASE stop this madness !!!  

Thank you for the opportunity to share my feelings on this issue. I pray that you and the other members on the Human Services Committee will do the right and ethical thing and have the proposal to eliminate Independent Providers removed from the budget.

Respectfully submitted,

Peggy Cooley