Monday, January 11, 2010


I'll take my fringe on boots, thank you.

Though you might think right now that I live on the fringe. I erased the original blog entry I was writing today because I wasn't comfortable continuing in a political vein. It riffed on the title of Public Enemy's album Fear of a Black Planet. That is all I can tell you without going into details. It is best left unsaid. I'm not that kind of person to be so graphic so I made the conscious decision to erase what I was writing.

Would rather talk about the fringe on boots.

Surf on over to Nancy's blog which I link to on the right. I could so commiserate with her about the back pain as I feel like I'm going to faint now and nothing but a cheddar burger will do for dinner tonight if you understand how it is. I'll ask to be given plenty o' packets of ketchup for the fries. Yes I want fries with that burger.

The winter 2010 issue of SZ magazine with my Living Life column about music and its effect on my recovery arrived in my mailbox today. The disconnect between where I am and the lives of a lot of people diagnosed with schizophrenia is never far from my mind when I read other people's stories in that magazine and elsewhere.

I feel exhausted writing about this. My work will never be done here in this lifetime. I do not shy away from it. I would not do this if recovery were not possible. My success would be an empty victory if I felt what Idid was not possible for others to achieve. If my achievement was a one-shot deal how could I profess to give people hope that they too could recover and do well?

What can I tell others? I certainly can't tell them to give up on ever hoping to reach their goals. I'm angry that most people face a disincentive to work because they'll lose their government health and drug benefits if they do.

One thing:

We need-every one of us-to set the bar.

I will tell you now and I would tell you a week from Tuesday or a year or 10 years from now: that I succeeded because my parents set that bar for me.

We might be limited in what we can do yet always we need to respond with dignity to our trials. We do not have to accept inferior treatment: we can work to institute justice in the world. We can set the bar in terms of what we will and will not accept from other people.

Act with courage in the face of your detractors to envision a better life for yourself.

Not everyone will respect you and there will undoubtedly be interference. First of all you will do well to face down your own limiting fears. This is easier said than done. Did I know that it would work out when I started my first job as an administrative assistant? Of course not. I incurred a $1,700 government disability check overpayment because SSA claimed I did not notify them right away that I found employment and so they kept sending me checks. This was an interest-free loan that gave me some security and I paid it back over two years giving the government $50 per month.

The number-one crying shame in the world is that people with disabilities like schizophrenia and other mental illnesses are penalized for wanting to work because they risk losing their Medicaid which would pay for health care and prescription drugs. In New York State the Medicaid Buy-In program allows people who work and make up to $44,000 the right to buy into Medicaid and continue their benefits while employed. I'm not sure if this buy-in is permanent or only lasts a certain number of years.

I was mistaken because I thought the Medicaid Buy-In existed in every state in the U.S. and it does not. The laws need to be changed even in Canada where the same hardship is faced for peers who want to work. That was the anger aroused in a reader whose letter-to-the-editor was published in SZ magazine. Her son had to quit his job so he could get dental work. She worried how he would be able to live when she and her husband were not alive to provide extra money for him.

What can we do to change these laws? It steams me. I'm not steamed over Reid's comments or anything else. The only thing I'm incensed about are injustices against people living with mental illnesses. This is the niche market I'm here to serve. Certainly the world has seen far greater atrocities yet the one I stake a claim to fight is the stigma surrounding schizophrenia.

"Violence and Schizophrenia: Taming the Criminal Myths"--the feature story in the winter 2010 issue of SZ magazine--tackled this issue. It talked about how people with schizophrenia fall through the cracks and are denied the treatment that would enable them to recover, thus creating criminals whose psychotic minds push them to commit suicide or homicide.

As regards Cho Seung-Hui who was the Virginia Tech murderer [quoted from The Insanity Offense by E. Fuller Torrey]: "Cho was court-mandated to be psychiatrically evaluated; he was held overnight in a local hospital but apparently not treated. He was ordered to get treatment as an outpatient, but did not do so. The counseling center at Virginia Tech received a copy of his court order mandating treatment, but it apparently did nothing. According to an official investigation, the center did not accept 'involuntary or ordered referrals from any source,' and even students with schizophrenia were treated only if they requested it. The Virginia state law for involuntary psychiatric commitment and treatment requires that the person be an 'imminent danger' to himself or others, or be 'substantially unable to care for himself.'"

The blood appears to be on the counseling center's hands.

The SZ magazine article ended with a quote by Barry Jones MD a Canadian psychiatrist:

"The solution lies in the area of public education. I have seen media reports of violent acts carried out by someone with mental illness constantly miss the point: they focus instead on gun control issues or school violence instead of the lack of services for the severely mentally ill. There should be more education about mental illness in schools and early detection. The legal system needs to find a way to deal more effectively with treatment orders for the mentally ill before the potential for violence has emerged. Stigma will always be present, but rational management of this illness can exist even in the presence of stigma."

Folks: stigma is not the issue we have bigger realities to deal with. I hear Andrew Goldstein--the psychotic individual whose pushed Kendra Webdale in front of an oncoming New York City subway train--sought treatment and was denied. Do I know this is true? It is what I've heard.

In the face of this reality how can an anti-drug guru like Peter Breggin and the anti-psychiatry contingent MindFreedom claim schizophrenia should not be treated with medication? They are the ones perpetrating stigma.

No: it is not OK to stand by and allow anyone in the Beloved Community to reach the point of no return.

Upon hearing the news that my first psychiatrist had died I hung up the phone and shouted to my father: "I want to see justice served for the last forsaken lot of misunderstood crazy people." Five years later I began my freelance writing and advocacy career.

Back to the refusal of basic human dignity for people with schizophrenia who want to work:

"My son got a job for two days a week, 6 hours per day, earning $8 an hour. Unfortunately, he had to give up his job because ODSP [Ontario Disability Support Program] cut him off. He had a very bad dental problem, and he had to cancel the appointment with the dentist because his dental card was canceled and then he had to fight to keep his drug card.

What kind of a crazy system allows this to happen? Do they want to get these unfortunate people back into the hospital, instead of helping them recover?"

--Anne, Ontario [SZ magazine letter-to-the-editor writer]

Make no bones about it: I have no choice in this matter but to champion the rights of people living with schizophrenia and other mental illnesses.

We are not criminals. We are decent people who were unfortunate to get a burden we neither wanted nor deserved.

As John Mabry wrote about in The Way of Thomas no human being on earth is separate from any other human being even though we are distinct physical beings. God wouldn't want us to turn away. The ability of one person to recover from schizophrenia affects everyone else in the world.

There: I've told it like it is. What more could I say?

Oh: this--people with schizophrenia deserve to recover. We don't deserve to be treated like dogs. We are human beings just like anyone with needs wants desires feelings and frustrations insecurities hopes dreams and successes JUST LIKE ANYONE.

We Are the One.

Just do it:

Act with love.

1 comment:

Chris said...

Well: not even dogs or any living being should be treated like this. You know what I mean.