The Silent Apartheid

By April 30, 2015Blog

I’ve only met one person who could read, and fluently speak, ancient Greek. A master of a dozen languages, he knew the roots and origins of almost any given word, an arcane talent which, I would wager, most people do not possess.

As an adolescent, I loved the song “Manic Depression” by Jimi Hendrix. His lyrics spoke of love trapped in a maelstrom of thoughts and emotions. I asked my stepmother what the title meant. Her lay explanation was simple and devoid of any judgement: manic-depression was a mental disorder defined by episodes of inconsolable sadness and extreme excitement. The name described the condition.

In 1980 the term manic-depression was changed to bipolar disorder, to more clearly distinguish it from clinical depression. I never once heard a bully shame someone for experiencing manic-depression, but cries of “You’re so bipolar!” continue to assault those suffering from the illness. Perhaps the name change wasn’t for the better, or it might be that you just can’t enlighten a bigot. Then again, there’s no reason not to try.

The psychiatric community is currently proposing to change the name of schizophrenia to something they say will be more palatable to the patient and easier on the clinician. Over four dozen papers have been published supporting this rebrand, citing claims that it would eradicate stigma and discrimination. Co-opting their parlance, I’d call that magical thinking.

The advertising term rebrand suggests that the previous brand has grown stale in the marketplace. An Old English word of Germanic origin, brand originally meant burning. The verb sense – to permanently mark an animal, criminal, or slave with a branding iron – dates from late Middle English, when it defined a trait that caused a person public shame. Branding has further roots in the ancient Greek for the making of said mark, a word that I assume you’re more familiar with, the mark of disgrace: stigma.

A case could be made that rebranding schizophrenia will do more to reinforce the weight of existing stigma against people living with the disorder than it will to reduce it. Lengthy explanations of the proposed new eponym or acronym will invariably end with a response like “we used to call it schizophrenia”, with all the baggage that statement entails.

Purported research into the rebranding gives one pause to consider: might some of those studies be subsidized by industries with vested interests? Considering that Social Security Disability claims for individuals diagnosed with schizophrenia are rarely denied, what would the prevailing politico- economic system stand to gain from the change? Would a lessened diagnosis based on new terms and terminology create an uptick in golf club revenues, or increase the number of cardboard boxes masquerading as homes?

Supporters state that the reason for the rebrand lies in the Greek origins of the word schizophrenia. Not in the actual symptoms, mind you, nor the public misconceptions due to media stereotypes, but in the native tongue of an ancient civilization, the very same archaic language that only a linguist could decipher.

Upon receiving my diagnosis, I responded to my own confusion and fears, not to the combination of two ancient Greek words, skhizein and phrēn, meaning “to split” and “mind”. I don’t speak Greek. This is not 469 BC.

Schizophrenia: a “split mind. From a certain angle, I understand that. In fact, there are times when I feel more fractured than split, like a mirror dropped to the floor. Like Socrates’ dust in the wind.

Among the proposed name changes for schizophrenia is Kraepelin–Bleuler Disease, named after German physician Emile Kraepelin who first classified the illness, and Swiss psychiatrist Eugen Bleuler who coined the term schizophrenia in 1908. You can already hear the snide remix of John Hughs’ legendary Ferris Bueller quote bullied-up to “Crap-lin? Blew-ler?” Humiliating. And what’s with the “disease tag? A brief internet search will show that schizophrenia is not a disease, but the likely result of a chromosomal mutation, a destination set before birth. The DNA address has been verified. Disorder, please. Not disease. We’ve been marginalized enough.

Another submission ripe for mockery is Youth Onset CONative, COgnitive and Reality Distortion Syndrome, or CONCORD for short. Excused from class or absent from work due to CONCORD? “Shoulda booked a light freighter, Skywalker! The crash-and-burn jibes are just waiting in the wings.

It’s clear to me as a mental health consumer that unless changes are also made to legislation, health service provision, and the reeducation of professionals and laypeople alike, the proposed rebranding will be for naught.

The National Alliance on Mental Illness defines schizophrenia as “a serious mental illness that interferes with a person’s ability to think clearly, manage emotions, make decisions and relate to others”. There is not one shred of intolerance or stigma in that definition. It is as accurate, simple, and devoid of any judgement as my stepmother’s kitchen table insights into the poetry of Jimi Hendrix.

Changing the name will not undo years of prejudicial thinking. People living with schizophrenia will still feel the sting of the invisible apartheid. Authorities will still profile us as violent criminals, even when statistics prove otherwise. Society will continue to abandon their own over misunderstandings that have everything to do with the symptoms, and nothing to do with the word attached to the diagnosis.

It’s not the name that stigmatizes, it’s the prevailing attitude of a culture too self-absorbed to see the effect perpetuated by its own ignorance disguised as witty repartee and snark.

Call it what you will, for whatever reason suits you best. I had a hard enough time accepting the truth that everything I knew was wrong, but this was my life I was fighting for, that much I understood. I sought treatment on my own. I worked hard. I still do. I’ve made progress and I don’t plan to quit. I’ll proudly stand and be counted. I don’t need to be branded again. My name is Henry Boy Jenkins, and I have a diagnosis of schizophrenia.

22 Comments

  • Roberta says:

    What a beautifully written piece of work. My older brother, my youngest son, and many ancestors on my dad’s side of the family were diagnosed with schizophrenia. I applaude you for the work you’ve obviously done to try to better understand your diagnosis and pray for you and all who live daily with any mental illness.

    • Henry Boy says:

      Thank you, Roberta for such a kind and supportive response. That you have firsthand experience with this illness gives you a unique perspective, one I hope you share with others often. Bless you and your family. Thanks again.

  • James C says:

    I agree that there needs to be a more comfortable name than Schizophrenia.

    Why not use the literal translation of the Greek and call it = the “split-mind” condition.

    • Henry Boy says:

      In a certain way, James, I’m right there with you. As I tried to say in my blog, I’m comfortable with the current term. It’s the ugly misrepresentation and discrimination and stigma that other people put on that word that makes it feel demeaning. I’m proud to name my diagnosis publicly; it helps others to see that there’s a human being behind the word, and not some stereotype. Cheers, and thanks for commenting!

  • Tara M says:

    Thank you for your thoufhtful and sensitive insights.
    You are a beautiful soul!

    • Henry Boy says:

      Thank you for your kind comment, Tara. It means a lot to gain support from within our community. We hold one another up. Good reason to feel proud of who we are. 🙂

  • Suzanne says:

    A rose by any other name…..

  • C.A. Mac says:

    All of your writing that I have read thus far has really struck me, and I can relate to so much. I too work hard to stay well. I too feel passionate about being treated with respect….for people to see the incredible strength and fight it takes to live with these heartwrenching illnesses.

    Thank you for your bravery. Thank you for speaking for us all.

  • C.A. Mac says:

    and as far as the names, I dunno…I suppose there are far greater battles to face than mere names, aye.

    • Henry Boy says:

      You’re right about that, C.A. There’s the whole media misrepresentation piece, the health care piece, the Americans With Disabilities piece, the list goes on. On this point I felt I needed to speak up as a person living with schizophrenia if for no other reason than to highlight the fact that misunderstanding and stigma aren’t related to a clinical term, but are the product of ignorance. I’m willing to address each of these issues. The rebranding of schizophrenia is very timely, getting lots of ink, and like Professor Elyn Saks, I felt that the world needed to hear about the illness from one who lives with it, rather than solely from results a focus group’s polling of the professional psychiatric community offered. Hopefully a few conversations will be generated. That’s always the hope.

  • Cory says:

    Well done Henry….another beautifully written poignant and enlightening blog….and I could not agree with you more!

    • Henry Boy says:

      Thanks, Cory. I appreciate your kind words and support. Also glad you’re with me on this topic. When it comes to change, the more of us focused in the same direction, the better.

  • Monica says:

    Once again you have given me pause to think a different way!!! I at first, for the sheer diagnosis itself and of course the name it holds I was terrified for what my son would endure with others having knowledge of his mental health…I set out in the earlier days, wondering of what might be going on with him, to educate myself to the fullest in any way possible to help him to understand things and to enlighten his world and any person that comes in contact with us!!! This name change for him I thought might make a change in another direction but your writing and what it says changes that for me!!! NAMI and the Family to Family course I took many years ago gave me more insight on his diagnosis and how to be the most supportive in his life!!! He lives with me full time and we work hard together to make it a joyful one!!! I read all of your blogs and can’t wait for the next one to appear!!! Thank you for helping me see this as it’s ok just with the name it has and it’s explanation and definition by NAMI is right on!!! I choose to call my sweet adult child a ‘different kind of perfect’ because to me he is perfect in all kinds of ways and to be honest he truly is a gift that has changed me in the mightiest of ways!!! He is a beautiful soul!!!!! His pure existence has shown anyone who gets to know him just how we all should be accepted for who we are no matter how we are!!! He is golden and I am the blessed one to be in his life!!! Thank you once again Henry for your blog!!! You make a difference BIG!!!!
    Monica

    • Henry Boy says:

      First off, Monica, I want to say thank you for the courage it took for you to share so openly. It’s terrific that you care so much about your son and the course his life will take as he learns, and as you both learn together, how best to create and maintain his treatment plan and life as he lives his life with this disorder. I have had a most unusual one myself, but it continues to improve with time and patience and the support of others. NAMI, BC2M, and NIMH are all awesome organizations, and there are many more world wide to follow for ideas, support, community action and advocacy.

      About the so-called rebranding: it’s not a soda pop, it’s a mental disorder, a life altering, chronic, and often debilitating one at that. Calling it something “clever” isn’t – in my opinion – going to change the course of bullies and thugs, legislature or news media. The word itself is not a slur. Words like “psycho”, “schizo”, and “freak” are. Mean people will be mean, and we may never be able to change that. But let the description of the illness remain descriptive. Let’s fight the bullies with kindness, with love for our community. It’s how we’ll show strength – in numbers, as the individuals struggling, living with, and treating our diagnoses.

      Your comments really touched me, Monica. Thank you so much for bringing even more change 2 mind!

  • Estelle says:

    Much respect and admiration, to you, Mr. Jenkins. This article is right on point.

    • Henry Boy says:

      Thank you, Estelle. I’m grateful for readers who care about the issues I write about. It helps make the globe a cozier place.

  • Marjun says:

    Thank you for this blog. Important to call a spade a spade I believe . People are now beginning to speak out about Schizophrenia and changing the name will put everything back to square one. My son has Schizophrenia and I am proud of him, because I know it’s a daily difficult and painful journey that very few understand. Yet he goes on. Is the purpose of a different name to it make less horrible then it is. Magical thinking for sure.

    • Henry Boy says:

      Thank you for sharing about your relationship with your son, Marjun. It is always lovely to hear from families who truly care and understand. I have a favorite phrase regarding that “square one” you mentioned: I say “circular circulation”. And I agree with you about the name change. It’s more about changing people’s minds through education and advocacy than just putting a rebranding bandaid on a very real (and often misunderstood) disorder. Keep sharing – I’m grateful for it and so are many others!

  • Anne says:

    Beautiful!!! So true!!! Those ideas do not come from those who live with mental illness. It’s like having a golf outing to fight stigma. How? We need to be out and in the public eye to show that there is nothing to fear and that we have issues not unlike those with other illnesses. Thank you for writing this.

  • Henry Boy says:

    Thanks, Anne. You’re correct in saying that the rebranding doesn’t “come from those who live with mental illness.” Professor Elyn Saks, who also has a diagnosis of schizophrenia (and an excellent book about her journey called The Center Cannot Hold) was recently quoted as saying something very similar: “We need to consult patients and see what’s least stigmatizing. We’re not a group with a big movement which can speak for us.” Happy that you feel the same way re: getting out in the public eye. Kudos to you for the courage and kindness!

  • RonaldF says:

    A doctor once told me not to talk to people about my problems as it would make life easier for me. I asked him if he would advise African-Americans to lighten their skin to make life easier for them. I did not receive a reply. Thanks for your writing. I am no longer going to be ashamed of who I am.

  • Karli says:

    Thank you so much for writing this.

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