Some final thoughts on Bill Macphee’s questions

I’m continuing my reflection on Bill Macphee’s questions from his post About Mental Health – What Is Stigma Anyway?

I would love for you to send me an email and tell me your thoughts on stigma: Does it really exist? Should we get rid of the word ‘stigma’ as Jane suggests? Or is stigma the root of all evil when it comes to mental illness?

I’ve talked about the first couple of questions in my initial post. I’ve also reflected on what I think stigma is here.

I think I’d like to talk a bit about the final question “Is stigma the root of all evil when it comes to mental illness?”

I think such a statement goes too far. I think that were stigma to be relegated to the same position in our society as other forms of bigotry like sexism, homophobia or racism (where it is viewed at least as inappropriate and a moral failing), we still would have a lot of work to do. Even today we still have debates on what equality means for women or for minorities. There is tension in what that means because equal is a broad concept but subject to individual definitions. I think we can also agree that while women are equal under the law, it hasn’t necessarily ended all sexist behaviour (and the same can be argued for racism and definitely homophobia).

So even if we get to the point where stigma isn’t as major an issue, we’re still going to be in a place defining what equal rights and equal opportunities mean for schizophrenia.I think that this story at the Huffington Post might help illustrate my point. The gist of it is that schizophrenia can be used as a means to deny lifesaving treatment such as heart or lung transplants because a schizophrenic might not be able to follow a recovery regimen and is a risk of suicide. In both cases highlighted in the article, the people who happen to have schizophrenia had large support networks and were positive cases but still were initially denied. This is IMAO a case example of stigma perpetuated by people who should have informed medical opinions in making decisions. Indeed, as the article says:

Now, let’s go back to my friend’s 93-year-old mother in law. No one questioned investing the huge resources and money that she needed to get her well. Artificial hips aren’t cheap. And, if it is a question of being able to work as it was for the lung transplant recipient, well she hasn’t worked in years and never will again. She is collecting a pension. Much like the 37-year-old African-American man with schizophrenia, she could have been made comfortable until the end came but I really doubt if that was ever considered. And, 100 people did not have to come forward to ensure she would get the care she needs in future. She will get the care she needs from the health system.

Now, the medical system (like any system) will have ingrained, sometimes systematic unfairness. When you add into the mix conditions that may impede success after a costly procedure, you have a major ethical dilemma.

This is not merely limited to mental health. For instance, there are instances where  doctors wish to deny (at least some) care for obese or smoking patients in the UK. Now I admit on some level schizophrenia is different in that you can’t quit it, but you as a patient have a choice to stay on your meds, or seek psychotherapy, etc.

I do think even with stigma gone, we would have a weighty decision of what to do for someone who refuses to take their medication and is unstable who needs lifesaving surgery. I mean, sure you can argue that their behaviour makes them a severe risk, but is it medically ethical to simply let the person die a slow death. Would forced medication be ethical in that situation if it would enable the person to live another 20 years?

I’m going to say, I don’t know. I am very lucky I don’t have to make such decisions. My point though is while there was (at least in my mind) clearly an issue of Stigma in the reported cases in the article, the situation could be adjusted to one where it was irrelevant yet still be a very pressing and weighty issue for the mental health community and society in general.

In short, I do think stigma is the biggest barrier the mental health community faces. However even if our goal is reached be it in five years, ten or fifty we still will have heart-wrenching challenges for advocacy.

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About Neil

I happen to have paranoid schizophrenia. But that is only a small part of who I am. I define me, not my illness. I always try and choose hope and choose to be a better person, though like all people, I have more than a few failures. Some have been rather spectacular.
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