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NAMI (National Alliance on Mental Illness) November 12, 2010

Posted by Crazy Mermaid in mental illness.

I saw an interesting bumper sticker this weekend. It said “You don’t see a Harley parked in front of a psychiatrist’s office”.  That pretty much sums up mental illness.  That Harley rider sneaks in the back door of the psychiatrist’s office, scared to death that someone might recognize him.  He’s there, all right, but doesn’t want anyone to know it. The only other place we see this type of behavior is in a shop selling sex toys.  Or National Enquirer.  Nobody claims to read it, yet it is a thriving publication. Go figure. Oh, and then there are NAMI members like me.

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

Because of the shame and stigma associated with mental illness, some- or many- of us are hard-pressed to publicly identify ourselves as members of the “mentally ill” club. Take me, for example. At our last NAMI Convention in August, I purchased a NAMI bumper sticker.  It took me three months to work up the courage to put it on my bumper.

What’s NAMI? It is the National Alliance on Mental Illness. It is an alliance of people touched by mental illness in some capacity.  Those with the illness, their family members, their loved ones, their neighbors and anyone they may come in contact with. In order to belong to NAMI you don’t have to publicly say you belong to NAMI.

Okay, so now you have the picture.  Let’s explore one of the side effects of not acknowledging membership in NAMI or even joining.

Started in the mid-1970’s by parents of schizophrenics, the organization has grown from its original intent to include all mental illnesses in its circle.  Yet I’m willing to bet that most of you readers have never heard of it.  Why is that?

Unlike any organization that I’m aware of, the people involved in NAMI face special challenges that other similar organizations don’t.  Those special challenges make it very difficult to finance and run the organization.

Imagine running Susan Komen’s Breast Cancer awareness organization, but without the help of either the person with breast cancer or her family.  Imagine her family being too afraid to acknowledge the disease, much less actively participate in the organization in some meaningful manner. People touched by mental illness don’t want to acknowledge that. Or they aren’t in a place that they can. Many members learn of NAMI when they’re in crisis mode, fortunately able to take advantage of the benefits of NAMI but unfortunately unable to participate in funding the organization.

All of NAMI’s services are free.  You don’t have to pay to be a member of NAMI or take advantage of their programs. But after the crisis blows over, the stigma of mental illness prohibits many people from belonging to NAMI or from publicly acknowledging their membership.

We do the best that we can with what we have.  And we don’t have much.  Having neither the broad experience of the business world (and access to money) nor (in a surprisingly few number of cases) the downright stability of mind, the volunteers do what they can with what they are presented.  But there is a big problem.  NAMI has very little money and very few people who are willing to not only fund the organization but to even acknowledge that they are or could be involved with it.

The grants NAMI receives prohibit, for the most part, use of those grant funds to perform the day-to-day operation of running the organization.  Try getting a volunteer with the right credentials to do that job for free.  As my dad says, you get what you pay for.  If you can’t pay anything, you don’t get much.  I am by no means disparaging the organization. However expecting volunteers who are experienced enough and patient enough to do the thankless job of continually trying to scratch the earth for funding is not reasonable. Yet with the lack of funding it is necessary.

Many NAMI members are mentally ill, surviving on $12,000 (or less) per year.  Therefore, NAMI membership is free to them.  It’s only $35 for the rest of us.  So getting a vast source of revenue via membership is closed to us.

When I talk about programs, I mean the “signature” programs such as the one I participate in, which is the “In Our Own Voice” program.  At no cost to the organization requesting the program, two mentally ill people come in and give a presentation on what it’s like to have a mental illness to whoever is willing to listen.

I have looked the homeless in the eye.  They are human, with the same rights as the rest of us, but their mental illness prevents them from exercising those rights.  Exposing the public to the face of homelessness is one of the side benefits provided- at no charge- by NAMI.  But running these programs costs.



1. waywardweed - November 13, 2010

I’ve been a member of NAMI for a long time. I also did the IOOV presentations for five years but stopped because I wasn’t feeling well enough to do them anymore. My older son has schizoaffective disorder and dealing with it has become harder for me, not easier over the years. It’s funny … I have no problem telling people about my own illness, but talking about my son is much harder. I do have a bumper sticker for me car, regularly attend meetings, even their yearly conventions. With NAMI’s help we are starting a clubhouse in my area. NAMI is wonderful!

Crazy Mermaid - November 13, 2010

That’s Great!

2. Heather Whistler - November 14, 2010

As someone with a Twelve Step background, I see many people shy away from announcing their participation in Twelve Step programs, as well. One thing I’ve noticed, though, is that the more recovery people have, the more willing they are to talk about their experience with the Twelve Steps. Do you think it’s the same with mental illness? Do long periods of stability make people more comfortable coming forward? Or is there just such a negative perception of mental illness by the public that people want to keep these experiences private at all costs?

I’m curious because my husband wasn’t ready for me to blog—even anonymously—about how I cope with his disease (bipolar disorder) for about a year and a half after his hospitalization. Now, though, he’s okay with it. Having some distance from the crisis, and some time in recovery, has made him more comfortable with his illness.

I love NAMI, by the way. The Family-to-Family class helped me so much!

3. Crazy Mermaid - November 15, 2010

Interestingly enough, while I was hospitalized (involuntarily) I told my family that they could tell the entire world about my hospitalization. They didn’t of course, but my attitude was an “in your face” kind of thing. For about a week after my release, I was still fine with it, telling a few people that I knew. But then I got very paranoid, asking my family who they told because I was s embarrassed about it. They had told no one, so then I felt safe until the neighbors saw me walking funny (lithium shuffle) and asked me what was wrong. I lied, telling them I screwed up my shoulder swimming, and kept the whole mental illness a big secret for many months. Even now, I am careful who I tell. But so far, I haven’t received any negative reaction. In fact, people are quite interested and sympathetic when I get the courage to tell them. A few people have become very close friends because we bonded over mental illness- people that wouldn’t have ever bonded with me under other circumstances.

4. Heather Whistler - November 17, 2010

It’s funny how we’re so much harder on ourselves than anyone else is, isn’t it? I also find that the way I talk about my illness/recovery has a big impact on how it’s received. When I’m really nervous and make it sound like this big, weird deal, people react in kind. When I’m calm and straightforward about it, they tend to see it as not such a big deal.

5. Meredith - November 17, 2010

Hi, I just wanted to tell you that your post inspired me. I found you through a link from FWD/Forward, and I’m going to join NAMI next time I get cash. Thank you so much for this.

Crazy Mermaid - November 17, 2010

And thank YOU for caring.

6. Jesse the K - December 14, 2010

Also here from FWD. I’ve been involved in general disability rights organizations (particularly transportation issues) but have always avoided NAMI “just because” even though I’m also BP. I’ve certainly worked with some great public transit advocates who have mental illnesses; guess it’s past time that I returned the favor.

p.s. The “snowflake” script on this page is very troublesome for me: I was able to depl0y my JScript sword to turn it off, otherwise it would have triggered a migraine. Could you add a “turn off the snowflakes” button for visitors like me?

7. Whippies - December 22, 2010

I encourage any one who can to join NAMI. People who are affected by an illness, friends and family and
psychiatrists and social workers. Professionals can would be helpful members of NAMI. After joining as a member, it would be helpful to stock doctors offices with NAMI brochures about support groups in their area. I believe this is overlooked and could provide revenue and increased membership and support to patients. NAMI does have a professional membership rate.

I encourage people to be an advocate for mental illness and support the silver ribbon campaign. Start by trying to sell ribbons to NAMI support groups and your State NAMI members. You can also reach out to Psychiatrists, social workers and therapists. Contact your states Psychiatrist association or social worker association and go to their yearly meeting and set up a silver ribbon booth
or contact their mailing list. Sell these items during mental health awareness month in May and mental illness awareness week in October.
Be creative.

Another idea is to send mental health awareness cards.
For Christmas this year I made a mental health awareness postcard with a silver ribbon to increase
peoples knowledge of the silver ribbon. On the outside envelope of cards I drew a silver ribbon and wrote support mental health and http://www.silverribbon.org.

I also designed a t-shirt for mental health awareness with a silver ribbon and it says support mental health awareness. On the back of the tshirt explains how people can support the cause of approving a silver ribbon postage stamp for the US. The tshirts came out great. If you or anyone else you know are
interested please contact me at elizakwilson@yahoo.com.
The tshirts are a great advocacy tool. I encourage others not to be embarassed about mental health as there is nothing you have done to be ashamed and it is just another illness.
I hope that others can start to help with this important awareness campaign. We need to come together and decrease the stigma and increase the awareness of mental health. It can not continue to be
barely supported financially & be one of the first
causes to be reduced to help balance the budget.
Please contact your legislators and discuss supporting the silver ribbon campaign and passing the silver ribbon postage stamp.
The beginning of the campaign for the brain was in 1999 to pass a silver ribbon postage stamp. This is such a long time. We really need to come together in the mental health community to support this program.
Contact local community health centers for support and your departments of mental health.
Contact your psychiatric hospitals to see if you can
have some silver ribbon pins ect. in their gift shop.
Do some fundraising activities for NAMI. It is possible.
Since 200 7, Canada has passed 4 mental health stamps and raised 1.5 million dollars for community mental health programs!!! It is possible.

Request that your local NAMI and NAMI national place the silver ribbon link on their webpage to increase the efforts of supporting the silver ribbon campaign.

I pray that I hear from some of you for ideas, support, to buy a silver ribbon t-shirt. Please
come together and use your voice to demand attention,
care and support. Our voice is the most powerful
tool we have to help improve the mental health community. My contact information is elizakwilson@yahoo.com

Crazy Mermaid - December 25, 2010

Thank you for your excellent comments. I tried to send you an email to get a pic of the shirt, but it was returned. If you can email me a pic at crazymermaid@live.com, I would really appreciate it. Thanks!

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