The Language of Mental Illnesses, Brain Disorders, and Disabilities
October 7, 2010
Updated February 27, 2014
12 comments 93 views
This guest blog is by Alan Johnson, a United Church of Christ clergy who coordinated the national conference Widening the Welcome: Inclusion for All.
The Importance of Words
“So, I am thinking about how to talk about my….well….my, you know, my mental illness. I mean, my brain disorder. I mean, my disability. Well, I don’t know how to describe what it is.”
Words do matter and how we talk about what we experience is important. It may be that through the years a person’s symptoms have led to a diagnosis, one that is listed in the DSM IV. When that becomes clear or clearer enough, there are ways for these symptoms to be treated usually by a combination of medications and psych-social-rehab programs. The major “mental illnesses” listed by the National Alliance on Mental Illness are major depression, schizophrenia, schizoaffective disorder, bipolar disorder, autism spectrum disorders, obsessive-compulsive disorder, panic and anxiety disorders, and borderline personality disorder.
One of the lively conversations today is around how to talk about these illnesses. “Mental Illness is an Illness like any other” is a phrase we have heard. However, that does underestimate the way that most illnesses can be determined. Diabetes or cancer or heart disease are measurable, based on biological data. “Mental” illnesses are not yet in that category. We go on symptoms, as mentioned above, and we don’t have a brain scan at this time to indicate why these symptoms occur. While treatable, the causes of mental illnesses are not completely known.
Still, there are many who say that mental illnesses are physical disabilities. They are biologically based and arise in some way from the brain. Therefore, we use the medical model of treatment. “Here are the medications to try in order to alleviate the ‘illness.’” This understanding has at least one enormous benefit. It may reduce the stigma that is present around “mental illness.” We can say that what has been known as “mental” illnesses can now be called “brain disorders.” It sounds less stigmatizing, removes the burdens of blame for what causes these symptoms, and can empower those who are living with the shadow of self-recrimination to speak and act more openly in society. Living into that reality, however, still does leave some more work to be done. There are people who find the word “disorder” as too clinical and medical. This is where the use of the word “disability” comes into play.
The UN Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, December 2006, stated, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” So is a mental illness or a brain disorder a disability? And just what does “equal basis” mean? I can’t compete on an equal basis with people who do an Ironman race. Does that mean that I am disabled? Who are we talking about as the “model” or basis of describing who is able and who is dis-abled? If I am able to do what “most” people are able to do, but that is because of the medication that I am taking, does that exclude me from being on the “equal basis” with others?
Language can be tricky. It can elucidate things or muddy things. So what can we do? Keep on keeping on working on language seeking to describe how things are. It will not be perfect since someone will always come up with an “on the other hand” perspective on what you are seeking to make general and universal. Perhaps the best thing is to talk with the person who is affected by a “mental illness” or a “brain disorder” or a “disability” to see how they see it themselves. This is all about relationships anyway. Connecting with someone who is affected by mental illness/brain disorder/disability may reveal something new and fresh in our own understanding and therefore lessen our perplexity and confusion about our use of language.
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kelib, referring to a person as damaged is hurtful...and even if their illness renders them incapable of understanding things we say, it does not render their friends and family incapable of understanding. Labels can take away a person's dignity...and I know it sounds nit-picky, but able minded people need to step back and be willing to change their choice of words and learn how those words affect those around them.
I understand that the person with the illness might not have a clue as to what the 'label' means...but if I said, "'so-and-so has X illness", and people around me heard me, they would take that to be a fact. What if I was wrong? What if I was in a bad mood and was being mean? I would be hurting that person in the long run, and that is what matters. Words are powerful-they can build us up or tear us down.
I am not picking or attacking here, just wanting to be a voice for others:)
This is a strange comment. Of course it matters, because truth matters. Secondly, by definition, victims are hurt by the actions of others, so of course they would care. We don't need to add to people's pain by our own lack of understanding. Taking the time to understand people's precise situation is the motivation behind "labelling". Understanding that we are all damaged people is a good perspective from which to start.
You are not alone! I have MS as well...secondary progressive.
You said, "I'm not looking for a label but for people to take me and other diabilities seriously."... We share the same thoughts. If I could make someone understand what it feels like to be in my shoes for 5 minutes, I would bet that I would never hear--'but you don't look sick', or 'you look good' from that person again when I explain why I cannot drive for youth that night, or why I cannot commit to a meeting 2 weeks away.
My reply to your original comment was an effort to give a voice to someone who couldn't speak up...you must understand the term, "brain farts"--I have them more frequently now, and it scares me to think that one day, I might not be able to express myself coherently... I guess that's why I advocate now-while I still can :)
Please feel free to contact me if you want to shoot the breeze with a fellow MSer!
Many other websites have general discussions about this topic as well. Diversity Inc. discusses "What are the Best Words for Disability?" for a corporate setting, which I think applies easily to church settings as well. The comments about the challenge of translating the word "disability" into other languages opened a new horizon for me. Also in this article, the word "disabled" is flat-out rejected for use under any circumstances. One other mention, Kathie Snow's articles on people first language are thoughtful and practical.
Thank you so much for the links...the Diversity Inc site is down for now, but I checked out the "People first Language", and so far it looks like there are a lot of things we could use to teach people about compassion. Not just in this arena, but in life in general. One of my favorite sayings is that your words can build someone up, or tear them down. Many times it's not so much about what we say, but how we say it.
Hello all: I checked out both links, they are now both working. Anyways, I understand the wisdom and the message behind the point of using people first descriptions. My only problem is that sometimes I get so worried about being politically correct, or even just not embarrassing myself that I would choose to not speak at all, rather than "say it wrong". I think it is more important to speak about these very important issues, than to avoid them for fear of saying the wrong thing. So I don't like to emphasize this too much. Or is this a bad attitude?
‘Saying it wrong’ is something we all worry about—especially if we really care about the person or the outcome of the situation...you worry about making it worse, or offending someone, or have someone take it the wrong way.
I feel that it is very important to speak up, because if we don’t take our opportunity to contribute in whatever the issue is, then we are not going to have much credibility if/when we do speak up...much like voting, I suppose. If we don’t bother to vote, then we really can’t complain to the party voted in that we don’t like what they are doing.
I hear this saying a lot, “words not spoken can do more damage than words said.” Have you ever said something that was important to you to another person, only to be met with silence? So you ask them if they heard you, and they say that yes, they heard you...and that’s the end of that topic? It drives me nuts! Because you are left thinking, okay...do they disagree? Is that a ‘no’? Do they care?
So what to do? For each of us, the solution is different. I have been described as someone who does not care about being politically correct...and I am still not sure if that is a good thing or a bad thing :) But I do know this—when we set out to do something to help; and it is right from the heart (no ulterior motives), then there is no way we can mess it up. Here is something that I finds help me, before I go to speak, to counsell, to have those hard discussions with my teenagers, I always say, “give me the words God-this is for your glory”. Trust in that, and speaking up becomes so much easier :)
Like Ecclesiastes 3 says, "There is a time for everything." In my opinion, language matters, and what we call people and what we call the issues that people live with matters. So it's good to talk about words and language because language reflects and creates attitudes, especially in a forum like this. However, there's a time to refrain from such talk as well. When I'm with someone who is talking to several people with great joy and passion about the "handicapped people" at his church, I don't interrupt him or correct him in front of others. But I might pray for an opportunity to talk privately about "people first" language. Maybe such an opportunity will come, but then again, maybe not and that would be okay. On the other hand, if someone were talking about "crazies" and "retards" I would speak up right away, because bigotry cannot go unchallenged, or the impression is left that bigotry is okay.
I have appreciated the conversation resulting from the inquiry/article I had written about the use of language, As with most things, it does rest upon the relationships that we are able to have with each other, whatever our and their condition might be, be it situations that are apparent or unapparent. I believe that the less helpful response is to not connect at all since we might be afraid to say the wrong thing. Avoiding a person who is "different" from us (apparently) does not allow the loving power of the divine Spirit of God to be present and possibly engaged. Again, creating a hospitable space that allows true conversation or an appropriate way to connect is of utmost importance. As one person said, you can ask a person who is using a chair, why she/he is using the chair, if they are willing to share with you. As Plato was to have said, "Be kind, for everyone you meet is fighting a great battle." It may not be apparent, but most of us are in that situation, fighting a great battle. When we are able to connect at that level of common humanity, with compassion, there is strength and courage that comes.
I do not believe there is the "right" language to use, but only the appropriate one. Engaging in supportive conversation with each other may lead to serendipitious encounters. This Friday we are going to show the movie "Music Within," the story of the beginnings of ADA. There will be a panel of folks who will respond. Keeping the conversation alive is a good way to continue to expand our educational outreach.
Our church has also just voted for adopting the Accessible to All (A2A) Covenant of the United Church of Christ. It has been a powerful process to move our congregation to learn about it and then enact it. It is a process. As is this conversation.
That is a great quote: Be kind, for everyone you meet is fighting a great battle. I don't think I would have understood the depth of the truth of that statement when I was younger, but as life goes on, well, it's obvious.
I have a daughter with many, many health issues, and she will often question me, why her? Why does she belong to an age group that seems so unscathed by illness, and yet be drowning in it herself? I don't always know what to tell her, but I will say things like, "life isn't fair" or " their turn will come" or " everyone gets something" or," you know what your pain is, they have yet to find it". These are hard things to talk with a teenager about.
By the way, what is ADA? And can someone tell me a bit about the A2A covenant?
ADA is a common acronym used in the US for the Americans with Disabilities Act.
A2A is a resolution passed by the 25th General Synod of the United Church of Christ of which Alan Johnson is a pastor. Perhaps Alan could say more about this.
The Christian Reformed Church has passed similar resolutions including
Also, individual churches are encouraged to adopt a resolution on disabilities to commit themselves to full inclusion and engagement with peole with disabilities. Here's an example.
A2A means Accessible to All. This is a resolution adopted by our General Synod, UCC. It has yet to grab hold of people in our churches. However, at our recent national conference addressed it along with other issues pertaining to mental health issues. Lots of info at www.wideningthewelcome.com. You also go to www.firstcong.net where you will read more about the covenant that we have adopted.
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