Tag Archives: invisible disability

Why I Took the National Alliance on Mental Illness (NAMI) off my Page

I like to put services that I think are helpful, or quotes I really like, on the side of my page. I had NAMI up as one of them. Because I’d never really needed to use them before and thought they were a useful place. Until I needed to use them. Now, they may be good at getting things done on a large level. I have no idea. I do have to note that their page does have some good resources, so I’m not throwing the baby out with the bathwater, so to speak. There are a couple of reasons I’ve taken them down I feel I need to mention, though.

1. They have launched a campaign to lower the number of people with mental illness in prison. This is a well meaning campaign, and I signed up as someone interested in following it. But things came up with another issue, 2., which made it clear that they weren’t quite thinking the whole thing through.

2. I was trying to seek advocacy for a friend with depression involved in a court case where the people involved have no understanding of mental illness, and, I feel, are mobbing her. I thought, “I’ll call NAMI. They’ll know what to do.” I was very wrong about that. They told me: “NAMI has no attorneys on staff and doesn’t have the capacity to provide advocates for individual cases.” They went on to say, “If your friend thinks she is
being discriminated against because of her mental illness, then Disability Rights Oregon might be able to help.” This was the state office of NAMI, and they said they forwarded my request to the local office, where the man here was on his honeymoon. That was on June 8th, so that’s a heck of a long honeymoon. There’s a caveat in here that I’ll explain in a minute.

3. I wrote them back, saying that if they really intend to keep people with mental illness out of prison, wouldn’t a system of legal advocates in the court system be a really good way to go, that way they’d keep people with mental illness from ever ending up in prison in the first place? Cricket. Cricket. No response. Because that’s the right way to go about it, IMHO. How are people with mental illness going to be kept out of prison if there isn’t an independent intermediary in place in the legal system to help them advocate for themselves to all the people who haven’t a clue about mental illness or how being locked in jail/prison without treatment is so damnably detrimental? Not to mention inhumane, unethical, and whatever else you care to call it. It’s a bit like shutting the gate after all the sheep are gone. Let’s wait until they’re all in the neighbor’s yard, then go get them. It’s too much work to fix the pen. What we  really need are advocates in the courts. I am very, very convinced about that, and NAMI’s non-answer was disturbing and sad.

4. I recently joined a group and found out how far-reaching NAMI’s non-involvement in personal cases goes. What the cost is in terms of lives lost. If they aren’t going to help people when they really need it, they shouldn’t call themselves the National Alliance on Mental Illness. They should call themselves a government action group and be done with it. To me, an Alliance is something that helps other when they are in need, not something that turns its back on people when they are desperate and at their wits’ end, and the cost is someone’s life, literally. And the effect that loss has on the entire family and circle of friends of that person. The demoralizing effect on other people with mental illness (and their families) as they see or hear of another person like themselves who succumbs to their mental illness because of lack of treatment, or lack of treatment facilities, or just plain lack of understanding.

5. The Office of Disabilities Rights refused to help as well, because it’s a Family Law case, and they don’t get involved in those. I don’t particularly blame them, because that would take up all of their time. I used to work for Protection & Advocacy, in California. I replaced NAMI with Protection & Advocacy, a nationwide, federally mandated organization who helps people with disabilities, and families with children with disabilities, on cases involving SSI/SSDI, Special Education law, and matters like that. I think they are an important organization, and I know they made a difference where I worked. Like every other federal agency, they are underfunded, but they do the best they can. If people have problems because schools aren’t adhering to their child’s IEP, or someone is having problems with Social Security over SSI payments, they’re the ones to go to. So even though they couldn’t help in my particular case, I still feel they are a good organization well worth putting up on my page for people who need help with those things. Because there are a lot of people who do need help with those things.

Treatment and recognition of mental illness is something that is sorely underfunded in this country. Probably many countries. Yes, there are many people with mental illness in prison, but why does no one look at why they’re there and not in treatment facilities? Why does no one question the fact that courts are woefully underprepared to deal with people with mental illness, treating them as if they are stupid and deliberately defying them? Truthfully, I believe they would rather work with drug addicts than people with mental illness–you can put addicts in treatment with timelines that fit into court schedules (I won’t go into the issue of addicts with mental illness). Mental illness doesn’t just “go away” to suit people like the Department of Human Services, or lawyers, or judges, just to make their lives easier. Mental illness isn’t “convenient.” Just because it’s an invisible disability doesn’t mean it isn’t there. The whole foray into the court system makes it worse. Adequate mental health care shouldn’t be a struggle, it should be a right.

Which is why we need independent Mental Health Care Advocates in the courts.

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Quelquefois (Armadillo)

Sometimes just sounds better that way, when the usual word is worn out.

I write terrible poetry. Be forewarned

That while the world is in a semi-fixed state I am not.

Not predictable like the tides; there are no little flip books to gauge the shifts in my moods.

I don’t know how others see me; I present a front–does it work?

I have few friends, it’s easier that way, to keep up the charade,

Because one thing I hate above all others is being misunderstood;

The fear of rejection, the fear of loss, the fear of holding on too tight.

Yet there are so few who understand, where it’s safe to be myself.

“Just suck it up, get it together, what’s wrong with you, you look perfectly fine.

There’s no reason for you to be so tired, it’s not as if you’re sick or anything like that.

There are people who have it so much worse than you, you should be grateful for what you have.

How long will all this take?

Do your part, get a job, contribute something to the world, to your upkeep, at least.”

If I stopped eating would I feel less guilty?

If I could sustain myself on the air, the same air I breathe to try to stay calm.

My focus, my attention, in altered states from new medications.

To sleep, and yes, to dream–quite vividly–a side effect, it seems.

I do have a sense of humor, a fairly quick wit; that’s not a charade.

My Kafkaesque armadillo to keep me safe.

(I think it would be difficult to get an armadillo into a straight jacket)

Does it work, my front? I don’t know how others see me,

With my invisible disabilities.

The Way Media Portrays Mental Illness Prolongs Stigma

So it has happened again, unfortunately. Another shooting at Ft. Hood. I am deeply sorry to the families of everyone involved. Everyone.

The first thing the military does is pull their trump card. He was being treated for depression and anxiety, and according to one source, other mental health issues. Another source came right out and said it, that he was being tested for Post Traumatic Stress Disorder after spending time in Iraq. At least someone named something a straight line could be drawn to from the military. Of course, he had not yet been diagnosed, but it wouldn’t have surprised me if he did have PTSD. The number of troops coming home with depression, anxiety, and PTSD, among other things, is high.

But, the military quickly rebuts, he had depression and anxiety. If Lt. Gen. Mark Milley of Ft. Hood was aware of just how many people do have that diagnosis, he might think (at least to himself) again before pointing the finger at mental illness. Was the soldier who committed the shooting, who was in Iraq but supposedly saw no action, yet who thought he had a traumatic brain injury, put in one of the Army Wounded Transition Units upon his return? His TBI was self-diagnosed, and granted I have more experience with this kind of thing, but I would have thought his self-diagnosis of a TBI was his way, the only way, he knew how to say he was having mental problems without “stigmatizing” himself. Being wounded is one thing, confessing to mental problems is another, one that the military doesn’t deal very well with, but they’re going to have to, because of the number of military personnel having these issues.

And one thing that is never really mentioned is that he may never have actually seen action, but he was sent over with the expectation he would, I’m guessing, unless he was was part of some unit who had a specialized unit, and even then, you’re not going to escape the realities of what the situation was there. You are sent over primed to kill. When you come back, are you unprimed? There may be a process for this, I’m fairly ignorant of the procedures. but once that is in you, as an instinct, it must be extremely difficult to get rid of. I sort of imagine their response to, “How are you,” is a little like the one below.

The really sad thing is that no one will know what type of man he was, that’s not what he’ll be remembered as. Not what kind of husband or father he was. No one thinks about that, either. His widow and children have been stigmatized by association. His widow will be interviewed by the investigators, his home searched, and they’ll “examine whether his combat experience caused lingering psychological trauma,” according to an article from USA Today. Do you think so? Lingering psychological trauma not being treated in one of the four special units he should have been assigned to.

Part of what continues the stigma against mental illness are incidences such as this, where the first statement out of anyone’s mouth implies “he shot and killed those people because he had a mental illness.” That is simply not true. The number of people who have mental illness is simply so high, along with the predisposition for weapons in society, it’s inevitable the two should meet.

Despite the fact this happens, let me just say this once

MENTAL ILLNESS SHOULD NOT BE A STIGMA

MENTAL ILLNESS IS AN INVISIBLE DISABILITY

MENTAL ILLNESS DOES NOT MAKE US INTRINSICALLY DIFFERENT

MENTAL ILLNESS DOES NOT MAKE US INTRINSICALLY DANGEROUS

What it can do, if we let it, is:

  • Lower our self-esteem
  • Lower our confidence in ourselves
  • Make us extremely sensitive to offhand remarks
  • Make us extremely sensitive to criticism
  • Make it extremely difficult if not impossible to attend social functions
  • Isolate ourselves from others
  • Make us socially awkward
  • Numerous other things

And then there are other people who can get along just fine, outwardly, with a facade so perfect you would never guess. That’s why it’s an invisible disability. It’s not obvious, like a physical disability. You can’t see it, It’s not actually real, is it? C’mon, you’re having me on! There’s nothing wrong with you, you look fine. Yes, I may look fine, I may sound fine, I may be sitting here at this moment with you looking perfectly fine. Do you know what fine stands for? F’d up, Insecure, Neurotic, Empty. It’s easier to say “fine” than to tell you how I really feel, because you actually don’t really want to know.

Because there’s a stigma attached to me. For people who know I have severe depression and an anxiety disorder, among other things, who aren’t very closely acquainted to me, they may wonder, what’s she capable of? She seems so nice. She makes teddy bears. She a writer, but not a very successful one…oh, no one bring that up, that might set her off. She was talking about that movie, Dead Again, the other day, and how much she liked it. Someone go through her area and take away all her scissors when she’s at lunch and give her kiddie scissors instead…

Now, all of the above is purely hypothetical, since I’m working at home now (working is a dubious term) — I finally have everything I need to start (including an awful lot of pairs of scissors), so really, that is a moot point now. But when I was at work, I was honest about my depression and anxiety. I thought if I was open about it, I could help break down some of the stigma. I was incredibly wrong about that. Sadly, for an organization that worked with children with disabilities, they didn’t do well with employees with disabilities. How’s work? Fine.

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Thinking about Brains

No, not about zombies, sorry. Though, if current statistics apply, one in four zombies may suffer from a mental illness, and may want to seek help.

It occurred to me that today is a sort of interesting and complicated day emotionally, travel-wise.

My boyfriend is flying back home today, where he went for the weekend to see a brilliant man. A man who used to be as loquacious as I am (believe it or not) and would talk to everyone he met. Talk and really listen to what they had to say. He enjoyed my sense of humor, which made us cohorts as soon as we met for the first time. He was witty, quick, and curious about everything. And if we were someplace and what he was curious about was local, he would ask until he found someone local and ask them about it. It was an endearing and sometimes embarrassing trait, but when he wanted to know something, he didn’t mess around. He always wore two pair of glasses, three if he had his sunglasses on as well, and inevitably lost the pair he stuck on the top of his head.

What does this have to do with brains? Summer before last we took a vacation together in Victoria, B.C., in July 2012. In was unseasonably cool. The weather always does strange things when we visit. This was only the second vacation in my life where we’d gone somewhere either in another state or out of the country, so this was a big deal. For me. My three traveling companions had been all over the place (well, many more places). He (I’ll just say S., it’s easier, and L. is his wife) had been having a little trouble with his memory, L said, so we were keeping an eye on him a little.

There were only a couple of times he got turned around or a little flustered. Even then, at one of those points, his sense of humor and remembering the situation makes me giggle. We were at the Royal BC Museum, and the loudspeaker came on and called my boyfriend to the information desk. S. had gotten separated from the rest of us, and instead of getting flustered, went to the information desk. He told them that he seemed to have misplaced his son. They asked how old his son was. S. replied, “41.” Apparently he had a nice conversation with them until my boyfriend got there, and no big deal was made of it, but S. did tell the story as a funny thing.

We returned home, me hopelessly in love with British Columbia, and not just because it was the first place in Canada I’d been–I’m not that kind of girl. Ah-hem.

By September of 2012 S. had been diagnosed with a type of dementia I had never heard of. I know people don’t like to use the word “dementia.” But it wasn’t Alzheimer’s, and I’m not going to put the two in the same category. It was a rapidly degenerative kind, the cruelest part for him, I think, when he knew what was happening when he was forgetting things and the anger and frustration that came with that. I know to a small extent what that feels like, but nothing like he must have experienced. L is a sweet, loving, caring person, one of the nicest people I have ever met, and her husband was falling apart in front of her. I can’t imagine that. I can’t imagine the strength she’s had to have, to live with a man you still love who lives in his own world. The family decided it was finally time to move him into a home specifically met to meet his needs.

As my boyfriend flies home today, I don’t know how the visit went. There were only short visits with his father. I just know that he’s quiet, keeps to himself, and doesn’t talk to anyone very much. He can’t walk without help, and they’re getting him a wheelchair. It’s only a matter of time. Less than two years since that vacation in Victoria.

At the same time, my best friend is on a train to where he’s having an interview at the Clinic he is trying to get admitted to for his difficult to treat diagnosis. Not a physical illness, a mental one. A 7 hour trip for an interview tomorrow. This clinic has the kind of treatment he needs, and I’m not sure if the interview determines that (along with all of his paperwork) or not. It shouldn’t. He needs the therapy they offer, in that environment. He’s a brilliant man as well; I would say he’s a genius but he’d probably refute me. He’s an artist–he can do anything he touches. Theater directing, set design, costume design, drawing, sculpture, animation–he did that for a longer while, restore signs on buildings, make puppets… painting is what he thinks he’s like to do, he’s an excellent photographer. He is amazing with words. We understand each other, don’t have to explain things. This is a diagnosis that, with a good treatment regimen, the symptoms can go into remission for years. That amazes me, and I want this so much for him. More than I want anything for me to get sorted out mentally. I’m okay, I get along, except for the not having a job thing. I have episodes every now and then. Usually when my meds are off. His diagnosis is very resistant to medications. He needs hope that this really will get better someday.

But compare the two. One brilliant man fading, who has touched so many lives. Another who has so far refused to fade, also a brilliant man, who needs to start this therapy and stick with it. And to continue on doing whatever wonderful thing he decides to do next, which will come to him in time–you can’t rush ideas.

There are things other people can do, things that can help. Stop making mental illness a stigma. If you can, give money for research on issues like these. Yes, the brain is relatively small, but exploring it is like unlocking the secrets in the ocean, or the universe. New things are discovered every day. New paths can be formed in time to perform functions thought lost. Nerves are amazing things, and the brain tells all of them what to do. Recognize there are invisible disabilities that are just as difficult for a person to live with as other disabilities. Just because you can’t see them doesn’t mean they aren’t there.

And most importantly, love. If there’s someone in your family with a mental illness, learn about it. It doesn’t change who they are. They are a person with (          ), not the other way around. Love them the way they are, because that is the way they are. They are not their mental illness. Love them and don’t hold them at arm’s length. Know that sometimes they have very low self-esteems, and don’t believe when you give them a compliment, but don’t stop. Tell them specifically what you like. Sometimes they are perfectionists. Tell them whatever they are doing looks great. Sometimes that’s a part of the diagnosis. Talk to them about what they’d like you to do in specific situations. Every person is different. My advice here, the specifics, other people could think is really stupid. That’s okay. It won’t stop me from loving people the way they are, or trying to learn how to help. This is a weird paragraph, I don’t want to end on this.

So instead, my almost getting eaten by a bear in Victoria. Not really. And for those who know the sign “DO NOT TOUCH THE BEAR” is there…well, sometimes I’m just a rebel, what can I say?

Undisclosed Location Tall, Dark, and Handsome

Undisclosed Location
Tall, Dark, and Handsome

I was just barely, barely holding his paw. While watching for security guards. Bearly holding his paw?

 

If S’s family, as this was a spur of the moment thing, thinking about both people traveling and why, would rather this not be up, I understand, and I’ll take it down.

 

 

 

 

 

Peridot Dragon Garnet eye