Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, February 27, 2009

Disability Discrimination

Disability discrimination is a subject I have alluded to, as a theme among my postings, but have never outright commented on or labeled.
I have spoken about my own past experiences with dyslexia, trauma, and illness as examples.
Thanks for hearing. Thanks for supporting.
What I can no longer tolerate for me, my family and all others like us who either publicly or privately boldly face our trials is the inability to access appropriate interventions or even a minimum standard of care.
This has been a long, under reported problem among the sick and disabled. We are all just too sick to fight.
Even Sybil, the first case study that defined “multiple personality disorder” in 1928, did not have access to a psychiatrist.
Her story was made notorious in the 1970s film of the same name.
She was taken on as a “study” to receive treatment only to be diagnosed with 16 distinct separate individuals within her.
Even in the 1920s, to achieve this quality of care, she had to lend herself to research.
I have the option to do the same. In August 2008, when my story became public, I was told I could allow Genzyme access to my medical information by calling their “stem cell research department,” and they would pay for my care.
Also, as an example, please see Alese Coco’s Fight2win.
I politely declined. The information my body contains will not be owned.
Selling it for my own comfort would not solve the problem of inaccessible and unaffordable treatments throughout America. It would lend to the 800 million dollars it costs in research and development to bring one drug to market, which takes, on average, ten years.
Many of us do not have that time.
I chose, instead, to face my trials publicly and appeal to the mercy, or hatred, of public opinion for free so everyone could have access. I chose to collaborate with moral providers who want to expedite a cure in hopes no person ever will suffer like I have.
Now, I keep waiting in line at the pharmacy behind people coughing and complaining of their back pain to receive their prescriptions for $0.50 and watch them leave with their full prescription reaching for their cigarettes and lighters.
When I step up, I pull out my credit card and often do not even receive my whole prescription antibiotic or pain control.
It is estimated 50% of disability and Medicaid are fraud.
I am not one of those people. My story does not make the news, but the woman who defrauded the community by faking cancer does. To receive assistance from supporters, I have allowed background checks and conversations with my specialists to confirm I am who I say I am.
I do not qualify for NH’s Catastrophic Health Insurance policy since, well, I am not a catastrophe by their standards.
I do rely on the compassion of others. I have heard and have experienced, that there is “no such thing as a free lunch.”
I state I have nothing to offer, quid pro quo is not available. What I do upfront is select carefully, set boundaries, make our situation, our history, and our needs clear. Everyone needs to be informed.
What I ask for is simple: communication.
If there is a problem I need to know as soon as possible to address the issue so all involved can be protected.
A friend told me once, “If you’re ever getting your nails done and you think the girls are talking about you, they are.”
Fear of judgment is the primary barrier to people in precarious situations seeking help and being open.
It is why HIPPAA exists. We are protected under the umbrella of “anti-discrimination” laws.
To publicly face illness, and to demand a safety net for you and your family, is to accept that you may be slammed as contributing to the victimization of America, or called selfish for channeling your “fight or flight” instincts that, really, is how we are all here in the first place, and ungrateful for asking for open communication and openly expressing feelings.

This is a well known barrier for finding patients for clinical trials and expediting the process to find a cure, just ask the American Cancer Society or a researcher. People who are needed to share their information to help others have long been in hiding due to the fear of discrimination and judgment.

I know that next person maybe you. I won't allow it.
We all have our own problems that arise. If parties involved communicate anything can be handled. Do not avoid the truth, even if it hurts.
In confrontation, I did say a person could “read about how I feel on my blog” and let her know she was not named, any other account is hearsay and gossip.
Please, look around and do not say that autistic child is just bad, or that mother caused her child’s down syndrome, or if that child just tried harder and his parents were more involved they would not have that cerebral palsy or anger.
It’s hard to admit when things are beyond control. We all do the best we can with the information we have.
A dyslexic is not just dumb.
If this was taken to heart, Einstein wouldn’t have contributed to physics. If I would have stopped writing the first time I was baselessly accused of plagiarism, you would not have the opportunity to understand the inner workings and social dynamics of the sick.
If my child is just misbehaved you are missing that he is hearing impaired and has undergone several surgeries concurrently with mine.
If I am just a bad neglectful mother for choosing to fight my disease, to go into VTACH, respiratory failure, heart failure, have the entirety of my skin peel off, my entire intestinal tract slough out and lose the sensation in both my hands and my feet only to roll over, stand up and ask for more because while I was lying in pain during these situation all I could focus on, my one tie to life, was that my child would grow up motherless. Then so be it.

If any of you would choose a world leader who was charming and strong, who eats wisely, does not drink, and is not a philanderer over a person who chooses to publicly disagree and face accusations of heresy and cannibalism, you just picked Hitler over Jesus Christ.
If any of you who have publicly disagreed with me find yourself in the same situation, I will be by your side or at your back saying what I am now.
I pray that doesn’t happen.
If you have never said or thought anything that may be hurtful to another or inadvertently hurt a friend or loved one, please comment, and show us all how that is done.


Anonymous said...

I hope you know, that while I & others have not commented on the recent posts, never doubt for a moment, that we are behind you Hill ... supporting you in your fight to get well. We recognize you, like all of us, are trying to do the best you can. And I also hope that you know we care about you ... I care about you. And I hope that we can find ways to voice our disagreements (as my Grandmother used to say) without being disagreeable.

I'm hugely proud of you Hillary & the courage you display by putting yourself out there. None of us are without flaws ... just know that you are reaching many of us & I for one, appreciate the lessons you have taught me.

So you go girl!!


Anonymous said...

I couldn't agree with "F" more! I continue to think of you and pray for youo everyday and many of my friends who only know you through me, do the same. Thanks for all you have the had the courage to stand up and fight for, I know it hasn't been easy.

Hang tough.

Jessie O said...