Sunday, August 22, 2010

Advocacy: creating the changes you want to see with NAMI

"Never doubt that a small group of thoughtful, committed citizens can change the
world. Indeed it is the only thing that ever has."

-Margaret Mead

My local NAMI (National Alliance on Mental Illness) consumer council used to be a group of four to five people who got together at libraries or Denny's for meetings and sometimes went on outings like trips to museums. Other than that, we didn't accomplish much, under the leader we had at the time, and we didn't have enough goals. I was unhappy with the situation for two years, before others in my NAMI chapter who were past presidents and board members, not consumer council members, got concerned about the way things were being run, and some changes were made. We sort of reconvened the council into a new, organized, and vibrant part of our NAMI chapter this past January or so, with help from the executive director and a past president of our NAMI chapter.

Since we reinvented our council, I have been the acting secretary. We had no elected officers until today, when we finally picked a chairperson, who I am sure will do a great job. Our council does a number of projects.

The favorite one of mine is an idea I came up with months ago. We are creating resource packets, with listings of mental health centers, public health clinics, food pantries, homeless shelters, etc, for people just being discharged from local hospitals.

I've seen people discharged with nowhere to live, and I've been discharged into an assisted living facility that was horrible, before, so this is something I feel is important. Since we started discussing doing this months ago, the idea has become known by the NAMI chapter board of directors who are apparently happy about this plan too. There was, however, some disagreement about how many pages the packets should be. I feel they should be thorough. Someone else thought they should only be two pages long. Finally, today we came up with a compromise, and this list I've worked hard on - which was almost trashed - is going to be used, as well as some additional information I'm going to add to it.

I can't tell you how excited I am about this project. It is a tangible, fulfilling way to make a difference in the lives of people with mental illnesses in our community. People who are in the same hospitals I have been in, and in the same situation of being lost and needing help. We will be helping them, and we will be actively combating the stigma and silence that enshrouds mental illness, by reaching out, and saying, "We have walked in your shoes, and here is where you can go for help."

With the packets, there will be a small brochure, for which I wrote the copy, about our consumer council, and our consumer support groups which are called NAMI Connections, so that these folks coming out of hospitals will be able to join us in our advocacy, our education efforts, and our support groups.

At the meeting today, was the new president of our chapter, and he said to me, "I can see it in your eyes, how fired up you are about helping people." And that made me feel good, because, honestly, I am. I don't have a ton of time and energy, but what I do have, I am trying to put to good use. Another project I came up with was to collect books, puzzles, and magazines for people in local hospitals. That hasn't been so easy to pull off, as most of our small group of council members do not have cars, and I have found I don't have much time during the day to deliver stuff to hospitals. But we'll work this out eventually. In the meantime, we're going to get these packets done, because I'm going to work hard to finish them and then the rest of the council will overview my list and we'll come up with the final version to have printed.

I almost didn't go to this meeting today. I had gotten discouraged when, at our last meeting, people seemed to think my list was too long and should be discarded, but when I got the chance to explain why I felt we needed to include all of the information on the list I had come up with, today, the others agreed with me. So now, I am very happy I went to this meeting. I'm also glad we're getting more organized. We have a chairperson now. We have a person who does a lot of work on small fundraising efforts that have raised money for our work. We have people who teach NAMI's Peer to Peer classes. We have discussed something else I want to do, which is a teach-in, or small, local conference about mental illness, and I hope that we will do that in the future.

When I think back to the days of my isolation in my psychosis, with no real help, and with no real idea of what to do with myself or where to go for assistance, I always think, if there had been someone there who understood...and I want to be that person who is there, and who does understand, for another person with a mental illness who is going through a scary time. We have nothing without each other. Humankind has plenty of evil in its history, but we also have plenty of strength. I do believe that a small group of thoughtful, committed citizens can change the world, and that people are mostly good at heart, and that it is important to take the time to walk in another person's shoes before casting judgement or ignoring their plight.

I want to share hope with people who are homeless, like I was at two different points in my life, or who are without treatment and don't know how to get it, or who are in need of disability benefits or food stamps and don't know where to turn. I want to be that light in the darkness, the hand extended to say, "you're not alone". Many years ago, I had a book called, You Are Not Alone, and I still think that was the best title for a book on depression that there could be. Mental illness can be so isolating, can feel so shameful, can leave one with such low self-esteem she has no idea how to make friends.

It's important for those of us who are coping with mental illnesses to work together to combat that silence, the stigma, and the isolation. We can change the world, and we must, because, nobody else is going to do it for us.

I love NAMI, and I love our consumer council here, and the people who are so dedicated to changing life for those of us with psychiatric disorders, and for educating the ignorant. I am so grateful to have this organization and these people in my life, and to have the opportunity to create change through this group. If you have a mental illness, or a family member has one, I highly suggest you check out the NAMI chapter in your area. NAMI has excellent resources, and they are all free. It can be a very supportive atmosphere, and it's also a way to get into the fight for equality. (Edit to add: NAMI is only available in the U.S., but I knwo there are similar groups throughout other parts of the world, such as Befrienders International).


  1. Hi Jen,
    Thanks for this post. I think it is great that you are involved in a group like that doing something to help those who are in dire straits. I really relate to what you said.

    When I went through some of my worst times, I also had no one there to really understand or be there for me.

    It was not much fun, and I don't want anyone else to go through that same experience, so when I have come into contact with people who are struggling I have tried to be there for them and refer them to professionals when appropriate.

    Suffering from mental illness is not a pleasant state, but it does mean that we have an understanding that others don't, and we can use that to help those going through what we suffered.

    It is really good that you are doing that in an organized way, and I wish you all the best with your efforts. Keep fighting the good fight!

  2. Jen...I am so excited about the project that your NAMI is doing. I know how much NAMI has meant to me over the past two years...our group like yours is making progress in being an advocate and also being more visible in this community. I encourage others to seek out their local NAMI for support. Thank you for this post.

  3. Thanks Depressed Reader: It's great that you try to help others with their difficulties. I think it's hard for people who haven't experienced something like a mental illness to understand what it is like and what someone might need advice on, but those of us who have been through it are really the experts.

    Janet: I'm glad you're still involved with NAMI in your area, and I know you do a lot of good work there. Good for you!

  4. Hey, I just created a social network for people like myself with schizophrenia, you should check it out and sign up if you feel inclined.


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