Tag Archives: disability

What is Advocacy?

12 Thursday Apr 2018

Posted by in mental illness, schizophrenia, stigma, Uncategorized

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Almost everyone I have come into contact with that has access to the internet and has a mental illness (with current research, I am not sure how much longer that label will be around) calls themselves an advocate. I frequently call myself an advocate as well but will do so less and less.

Calling yourself an advocate makes it appear to people, not that you have the experience of one person, but that you are an expert or authority on one of those illnesses. Most of the advocates that I have met don’t even bother to keep up with laws, trends, research, etc. that have to do with the illness where they are viewed or seen as an expert or authority.

I will give you an example of advocacy that I think harms the larger community of people living with a brain illness. The disability community has long preferred people first language to refer to people with an illness so, a person would say, I have diabetes, not, I am diabetic, or I have cancer, not I am cancer, or I have schizophrenia, not, I am schizophrenic. Using this word may seem like a small issue to someone who is an “advocate,” and they may decide they don’t care about that issue at all and scream from every platform they can find, “I am schizophrenic! I am schizophrenic! I am schizophrenic!”

It is great that they don’t think this is a big deal. But view it like vaccinations. Many of us don’t get vaccinations to prevent ourselves from getting an illness we get vaccinations to prevent giving the illness to someone who is far more vulnerable than us. It is the cost, the dues, the responsibility of living in a community. We take care of the most vulnerable among us.

I will say that for many people being called a schizophrenic is harmful. People who call other people that are making that the key source of their identity, not allowing them to first be, writer, teacher, fireman, lawyer, wife, husband, son, father, mother, sister, brother, etc. We all have so many identities that we would prefer to be known for rather than the one that is seen as broken, or ill.

I think it is a matter of privilege that people can say the word schizophrenic doesn’t bother them. It means that being dehumanized and identified as an illness has no bearing on their lives and their happiness and their success. I challenge the people who think this way. I think “advocates” who think this way are unwilling to admit that there is a huge divide in the mental health community.

There are those with the privilege of having clear enough thoughts and the means to write on the internet every day, and there are those, living in the streets, in prison, those at risk of being shot by police, and those without access to treatment. Those people can’t afford to be demeaned anymore than they already are. Seeing them as a brother, mother, father, sister, is critical to their survival and seeing them as someone who is schizophrenic is harmful because let’s face it, people still believe people with schizophrenia are less than, not quite human, and in some cases capable of monstrosities.

In my world, until all the mentally ill are cared for, and treated with dignity, then none of us are free to claim that some issues that demean others are of no harm. It is our responsibility to stand up, and if we are going to call ourselves advocates, let’s get to it – people are dying.

Whose Voice Should Be On the Front Lines?

03 Sunday Dec 2017

Posted by in bipolar, caregivers, mental illness, relationships, schizophrenia, stigma, Uncategorized

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I have frequently written about caregivers and their role in helping, assisting, loving, organizing treatment, taking care of finances, etc. for those of us with a disability (whether it is schizophrenia, autism, or any number of other disabilities). Caregivers are essential, and I know they need their space, their groups, and their support, and they have every right to tell their stories.

Here is the thing though, and I say this with caution (as not to offend any caregivers): we have our voice, and many of us would prefer that the public learn about our conditions from our perspective and not always the perspective of the caregiver.

Recently on Facebook, a freelance writer who I am in contact with on social media, accepted a job writing about schizophrenia, from an online site (she doesn’t have schizophrenia). I know at least a dozen writers with schizophrenia who are trying desperately to make a living doing something they can do (because there are many jobs they can’t do) and this freelancer is not only taking a job from “us” but is going to be “our voice” as well.

I am a little tired of the story of parents of a child with schizophrenia turning up in the New York Times, or other prominent newspapers or magazines, (anywhere actually) because inevitably it is a story about how “awful” it is to have a child with schizophrenia. We have all read the story of the sad “before” – great athlete, great student, popular, outgoing, to the “after” – withdrawn, unable to read or attend classes, etc. I for one, am tired of that story – extremely tired. There is another story to be told. There are thousands of other stories to be told.

I think there is a place for caregivers, and their stories, but I think the ones who should be given precedence to tell the story of schizophrenia, or autism, or anxiety, or physical disability, are those who live it. Our stories, our voice.

I don’t want to see another Hollywood script about the creepy killer having schizophrenia. I don’t want to see another newscaster or journalist speculate about the possibility of a mass shooter being mentally ill, and I don’t want to read another story by a parent of someone with a disability about how that disability is lived out.

I want those of us with schizophrenia to define schizophrenia – not Hollywood, not the media, not parents or siblings. There are huge misconceptions about schizophrenia held by the majority of the public; I want to be on the front lines dispelling those misconceptions and myths.

I am thankful for every single person who cares and is an ally to anyone who has a mental or physical disability. It is time, though to allow us to speak for ourselves. And won’t that speaking, that writing, that telling be one of the most powerful tools in getting rid of stigma, ignorance, and all the other negative perceptions? Besides, allowing us to do and get a paycheck for the jobs we are capable of doing, it also lets us define our lives and what they look like – something people have been doing for us (incorrectly) throughout history.

Would You Hire Someone with Schizophrenia? Be Honest.

11 Saturday Nov 2017

Posted by in mental illness, schizophrenia, stigma, Uncategorized

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I’m slightly heartbroken. I haven’t written about this until now because I was trying to lay low about it, but I applied for a job and found out yesterday I didn’t get it. Initially, I applied for the job online. The company had me take a test. I found the test to be one of the more difficult I have taken for employment. I must have done well on the test because the company scheduled an interview. I interviewed and thought I did well. The company then set me up for a computer conference interview with two other employees. I thought that interview also went well. Part of the interview was another test. I didn’t do great on the test, but I didn’t bomb it either. In the years since I graduated from college, if I made it to the interview I almost always got the job.

I can’t help it, but I keep thinking there is a possibility that the company Googled my name and came up with dozens of articles about schizophrenia. This is the second time since I decided to disclose my diagnosis publicly that I have been turned down for jobs I was highly qualified for and after I went through lengthy highering practices.

I have tried working a few times in the last few years, and it hasn’t worked out, but this was a job I knew I could do. It was a work from home customer service job. I have years of experience working with the public in difficult situations.

It is possible that they found candidates that they thought fit the position better than I did, but the possibility that they discovered my diagnosis of schizophrenia and chose not to take a chance on me because of stereotypes and misconceptions, will never entirely leave my mind.

I wish I could find a part-time writing job because artists and editors tend to be less judgemental about mental illness than the general public. Also, I could work from home, be creative, and not worry about the symptoms that crop up on a daily basis.

I’m happy that the writing world works differently than the rest of the world – you pitch to an editor if they like your story they either tell you to write it on spec, or they buy it outright. I’m having a tough time selling enough articles to make a substantial paycheck, but I’m going to work harder at it now.  I feel like I am personally fighting stigma, disability, misconceptions, etc. and that has put a determination in me to succeed and say, “See, I told you, I am worthy. See, I told you I am worth it.”

I want to be one of the ones who can make a livable paycheck and have their dreams come true at the same time. Stay tuned – let’s make this happen.

Look for much more writing to come.

Learning Not to Make Assumptions Especially Regarding Dis/ability

23 Tuesday Aug 2016

Posted by in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma

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When I had my job downtown, and I used to take the bus or walk to work, I regularly encountered my city’s growing population of homeless people. Many of the people I walked past asked me for money. I occasionally give money to homeless people, but I prefer to buy them a meal. With this preference in mind, I went grocery shopping and bought bread, peanut butter, and grape jelly. That night before going to bed, I made eight to ten peanut butter and jelly sandwiches. I carefully packed them all back into the bread sack and took the sack with me on my way to work the next day.

I offered a sandwich to every person I saw asking for money on the street. Not one person took the sandwich. (I ended up giving them away to my coworkers). I learned a few lessons that day that extends to other areas of life and people. The most import lesson was, don’t assume you know what other people want or need.

It is possible that every person I encountered that day had already had breakfast at one of the local shelters, or even at Starbucks or a convenience store. It is also possible that some of the people I offered sandwiches to had schizophrenia and like me don’t trust taking food from other people. It is possible that living on the streets as a vulnerable person, they have learned that not all people wish them well (we have had many beatings and even murders of homeless people in the last year). There are many reasons for not taking a sandwich from a stranger. I can’t possibly think of all of them, and it is possible that each person had a different reason.

Not assuming what other people want or need extends to all the people and relationships in our lives, but especially to those living with a dis/ability. People often think that they know what is best for someone with a dis/ability or what that person would want or need. These assumptions are where well-meaning people frequently give advice about nutritional supplements, exercise, spiritual practices, etc. believing that if the person with a dis/ability would just do something differently, their dis/ability may be more manageable or may be “cured.” This advice, unless asked for, is mostly unwanted, belittling and at times degrading and damaging.

I don’t believe that any nutritional supplement or any diet, vegan or otherwise will clear up my schizophrenia. I also don’t believe that God is somehow punishing me, and if I just prayed more, or prayed the right way or put the Bible on my head and did a jig that God would heal me. I most certainly don’t think demons possess me.

If someone asks for your advice about diet, exercise, spirituality then that person is open to suggestions and ideas about those things. If someone doesn’t ask, it is possible they are already getting the best treatment available to them, and those types of comments will come as an insult even though they were not intended that way.

When someone says, “If you went completely vegan and gluten free, your symptoms would clear up,” those of us with a dis/ability hear, “You don’t know your illness. You don’t know your body. Your doctors (even if they have been working with you for years) don’t know as much as I do. You aren’t doing everything you can to be “well.””

When you have an illness and are open about it, people will say all kinds of well-meaning things that don’t land on our ears or heart or mind in well-meaning ways. The most harmful thing that people say to me and someone says it every few months is “You don’t have a mental illness. You are full of demons.” What I hear when someone says that is, “God doesn’t love you.”

Saying a person with schizophrenia has demons is particularly cruel because we frequently experience delusions and hallucinations that have to do with God or religion. After those episodes are over, if we still want to practice our faith, we have to figure out by ourselves how to get back to a sort of mainstream Christian belief system (or whatever religion that person practices – I am Christian and have only heard this from Christians). If schizophrenia was caused by demons and not an illness why wouldn’t more people struggle with it, and as I always ask, why would medication be able to chase demons away?  Are demons opposed to living in someone who takes anti-psychotics?

I don’t assume I know what life is like in a wheelchair. I don’t assume I know what life is like with MS. I need to ask people who have a dis/ability that is different than mine questions and not hit them with answers. Hitting someone with a dis/ability with an answer before you know their circumstances, symptoms, struggles, is giving them one more thing to feel misunderstood, isolated, angry, or other negative thoughts and/or emotions.

My life is good, and so are many other people’s with dis/abilities, but like everyone else, we don’t need one more thing to drag us down. I try not to be a weight to others, let’s all try it together and maybe all of our struggles will seem lighter as we enlighten each other about the thing we know best – ourselves.

Getting Past Internalized Stigma

06 Wednesday Jan 2016

Posted by in hope, mental illness, schizophrenia, stigma, Uncategorized

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I kept my illness a secret for almost twenty years. It is probably obvious to everyone who knows that I kept it a secret, that I have some internalized stigma. If I didn’t have internalized stigma, there would have been no reason to hide my illness all those years.

I felt embarrassment. I felt shame. I felt different. I felt broken. And then there are all the ways I felt people would treat me differently and how they would see me as “crazy.”

Over the past year, as I have become more open and public about my diagnosis, I have learned a lot. In fact, I continue to learn every day. I have learned about the issues involving the disability community, the issues, and policies regarding treatment of the people with mental illnesses, and most importantly I have learned a lot about myself.

I am no longer ashamed of my diagnosis. I don’t feel different or broken. I feel like I have used my illness to try and make schizophrenia more mainstream and less “creepy” “scary” and stereotypical. Everyone who is reading my blog or the dozens of websites I have written for knows that not everyone with schizophrenia is on the street or in the hospital. I hope people also know that although schizophrenia is serious and can be debilitating, many people living with the illness are leading average or “normal” lives.

I have used my diagnosis and the personal knowledge I have of it to try and make people more aware and accepting of an illness that has been, and continues to be, wildly misunderstood.

I am the woman next door. I am the woman in the grocery store. I am the woman in the park. I am the woman waiting at the doctor’s office.

I frequently point out that I am a wife, a daughter, a sister, a friend, and an aunt.

And it is that last title that recently grabbed ahold of what was left of my internalized stigma and tried to chase it away. After twenty years of fear, shame and embarrassment, I have opened up my life to the world and that opening up also included people I have loved and cared about for years.

The other day my niece, who is eighteen, told me she looked up to me more than I would ever know.

The woman who was too ashamed to tell people that she had a chronic mental illness has a niece, who is young, smart, and beautiful that looks up to her.

Internalized stigma gripped my life and kept me down for over twenty years, but as I’ve started to overcome it, I have to begin to internalize other things. Someone very special looks up to me and instead of hiding that for twenty years, I am going to show it off to the world in any way that I can. I’m losing the negative and embracing the positive.

I never dreamed of being an example of a strong woman. I never dreamed that I would write daily about schizophrenia. I never dreamed that living openly and honestly would bring about healing and strength. There is so much I never dreamed of because of stigma, stereotypes, and shame. I have a completely different life than a year ago and to be honest with you, I love it. I have schizophrenia, but it doesn’t have me.

Equality And Justice For All

28 Monday Dec 2015

Posted by in bipolar, mental illness, schizophrenia, stigma, Uncategorized

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Yesterday my husband and I watched Netflix all day because my back was hurting and the two of us came down with a cold. We watched an old movie, “Regarding Henry,” and we watched a documentary from 2007 called, “For the Bible Tells Me So.”

“Regarding Henry” is about an attorney, who isn’t a nice guy. He gets shot and has to learn everything all over again. It is about his transformation. It is a feel good movie.

“For the Bible Tells Me So” is a documentary about how many people in the church have treated their gay children and the things that many pastors and famous preachers have preached about being gay. It only got three stars on Netflix (probably because of a poorly done cartoon that explains studies scientists have done to find the cause of homosexuality, and it lists all the medical associations that no longer consider it a disorder). Besides the strange cartoon plopped in the middle of the documentary my husband and I both think it is worth watching.

Many people writing about mental illness call themselves advocates, and I want to suggest that if we are going to be effective advocates, we need to advocate for equality and inclusion for all people. I didn’t know this, but LGBTQ teens had a much higher rate of suicidal ideation and attempted suicide than the general population.

Suicide is a problem that should be on the radar of any mental health advocate. The other things that should be on our radar are the number of people of color locked in prisons and who suffer from a mental illness. Women should be on our radar too because it is a fact that doctors often dismiss their complaints or treat their pain in a much less aggressive manner than they do that of men. Also, the percentage of mentally ill women in prison is higher than that of men. 

I have known for a long time that there is an intersection between disability issues, feminism, racism, and LGBTQ issues. As someone who cares passionately about the issues regarding the mentally ill, and how we are perceived, treated, talked about, housed, etc. There is no way to move away from these other issues.

To be an educated advocate for the mentally ill and to understand all of the issues and how they intersect, collide, and combine with other issues, we need to start reading about feminism, racism, LGBTQ. The problems inherent in these movements are also our problems, not just because equality and justice are something we are fighting for, and we should help others to achieve – these issues have an impact on the mental health of Americans as a whole. The way I see it is that we must move forward hand in hand because if we leave one group behind that group will keep the rest of us from truly flourishing. Many of us are in this together.

If You Were To Make Me A Character In Your Writing, What Would You Say?

28 Wednesday Oct 2015

Posted by in mental illness, schizophrenia, writing

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I am taking a creative nonfiction class online from UCLA. One of the students in the class wrote an essay about himself and a relative or friend of his, whose name is, Richard. I loved the way the author of the story described Richard – wearing a helmet, slapping his hands to his head, wringing his hands, excited hoots and hollers. By the way that the author described Richard it was obvious to the reader that Richard had a disability of some kind, but the author never labels Richard, and he never discloses the disability. Richard is just a person with unique characteristics.

This made me think about my illness. How would another writer describe me, letting the reader know that I have a disability, but never naming the disability? What would be written? What could a writer say about my behavior that might help a reader guess that I have schizophrenia without spelling it out?

Of course, the writer could make it easy, and say that I was talking to voices that no one else could see, but that wouldn’t be an accurate portrayal of my everyday life.

The writer could also tell the readers that I believe some elaborate conspiracy theory about aliens, or a secret government agency, but again, that wouldn’t be an accurate portrayal of my everyday life.

In order to be true to my real experience. The author would have to know me very well, or be a very keen observer, in order to detect my symptoms and describe them accurately to a reader.

This imaginary writer, who is writing about me, without labeling me, but wanting the reader to know I have a disability, would probably start out by having me eating a meal. S/he could say that I thought my food tasted funny and have me end up either pushing my food around my plate pretending to eat a little bit of it, or changing my plate of food for whatever my husband may have ordered.

The writer could have my husband and I traveling on an airplane. I might be visibly agitated. My husband trying to do everything to distract and comfort me. I may end up taking a pill and later calming down enough to play hangman with my husband or read an article.

The writer might have me at a conference, or with a group of people and then follow me home, where I can’t get comfortable. I walk between my bedroom and my living room. I curl up on my bed for a few minutes and then get up and go to the computer to check my e-mail. Nothing I do seems to make me happy. I am agitated. I may end up taking a pill and going to sleep for half of an hour. I wake up and I no longer need to move from room to room.

No matter how the writer described me, if s/he was true to my daily experiences, then it is doubtful that the reader would guess that my  disability is schizophrenia.

I find both joy and sorrow in this reality. I find joy knowing that my illness isn’t easily identifiable, I find sorrow knowing that the stereotypes are so ingrained in our culture that few if any could recognize a severe mental illness if they had a description of symptoms described to them.

Like Richard, I am just a unique character, that needs no label. I hope a writer would handle me with so much affection, compassion, and care.

Are There Limits To Your Advocacy?

17 Saturday Oct 2015

Posted by in mental illness, relationships, schizophrenia, stigma

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I don’t want the people at my husband’s office to know that I have schizophrenia. I know that some of them already know, because I have come out so publically about it, but if I had my way none of them would know.

The reason behind this is sad but simple, I don’t want people to look at my husband and think   “Why would you marry a woman with schizophrenia?”

I am no fool. I know what the majority of people think about having a mental illness, and particularly schizophrenia. I know from experience that even knowing me doesn’t change the lifetime of stereotypes built up in most people’s minds.

I have written so many articles about the language we use that is degrading to people with a mental illness and I have “friends” (and boy, do I use that term loosely), who seem to delight in using that language more than ever. I know that these people’s thoughts are small. The fact that they make personal attacks against me is actually immature and lame. I think it is because I am now a threat. I study. I read. I call people out on racism, sexism, mentalism, and any other forms of hate and bigotry when I see it. I call them out, because injustice and discrimination against even one group is too many and there is an intersection between all inequality and injustice. The intersection for me is that I am a woman who has a disability. The intersection for someone else might be that they are a person of color with a disability, or they are gay and a person of color.

In any case, I am calling people out. I know people don’t like to be called out. They don’t like to think that they are the ones who are displaying ignorance, discrimination, and hatred publically and openly. I get it. I have become the voice that many people don’t want to hear. I’m that uncomfortable person who lets people know their jokes are offensive and not funny. I get their resentment. I get their desire to live in their current way of thinking. Change isn’t easy – it comes with a price.

I can’t imagine how lonely it is for some people who have stood up in the past, or that continue to stand up. I haven’t found my people yet, those people who understand exactly what I mean and what I am fighting for, and why it is important not to stereotype, demonize, or dehumanize any group of people. I have a feeling I’m closer to discovering my crowd – people that will take the risks necessary to make people uncomfortable, and force change.

The truth is I think that I have guts and courage when it comes to a lot of things, but I am a ragdoll without bones when it comes to people judging my husband. He doesn’t care about other people’s judgement. He doesn’t care if they don’t understand the depth of true love that really does honor the vow – in sickness and in health.

I have to tell you though, he’s my weak spot where advocacy is concerned and I want to hide my illness to protect him. For that, I feel like my advocacy has limits and that I am a coward.

How to See and Not See a Disability

30 Sunday Aug 2015

Posted by in hope, mental illness, schizophrenia

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I talk to my mom on the phone most days of the week. Often, we don’t have much to say to each other, because neither one of us get out much. Occasionally, my mom will read something in the newspaper and share it with me. Then she says, “I had some chat today.”

Last week, she said she had some “chat” for me. She read part of an article out of the newspaper about a man who had recently finished his master’s degree and was out celebrating.

He went with some other people to enjoy his accomplishments, and when the music started he began to move his wheelchair around to the beat. A woman, seeing him dance in his chair, left her partner and came over and danced in front of him.

In the article, the man said that the woman’s gesture ruined his evening. He was out having fun. He was enjoying the evening and the woman saw his chair and singled him out. She didn’t see him as a man enjoying himself. She saw his chair and took pity on him (at least that is how he interpreted the events and ended up feeling).

As someone with a disability, and as someone who doesn’t always know how to respond to disabilities beyond my own, I feel for both the man and the woman in the story.

When someone has a mental illness, I think it is best to treat them how you would treat anyone else, and leave it is up to them to tell you where their limits are. This probably works with all people with disabilities.

It is hard to be disabled and admit to yourself that you can’t do all the things you once did, or all the things that others can easily do.

It is important to see the person first and not the disability. It is important to allow people to be as independent as they possibly can be, because it is tough to ask people to do things for you, or make accommodations for you. Asking strangers for help can be particularly difficult.

I’m sure the woman who left her partner to dance with the man in a wheelchair intentions were good, but we need to listen and learn from people who are different from us about the most respectful way to handle their differences.

I know it is uncomfortable to be presented with a situation where you want to do the right thing, but you don’t know what the right thing is.

The last time I was away from home, and was overcome by anxiety, my friend said, “Do you want to walk?” On that walk, I was able to tell my friend about my anxiety which I was unable to overcome and I asked her to take me home. My friend didn’t make any assumptions about my symptoms. She didn’t try to talk me out of them, change my mind, or tell me to get over it in the many ways that people “kindly” do to people who are mentally ill. She was simply present for me, listened to me, and then when I asked, she acted by taking me home.

I can’t think of a better way to support someone with a disability – listen, support, act if asked.

Most of us want to do the “right” thing for someone with a disability. The right thing can be allowing them to lead you in the direction they want or need to go.

It’s tough to realize our best intentions are sometimes insulting, or rude, or hurtful, but if we can put ego aside and allow people to teach us, we will be far more compassionate, educated, and sensitive.

That can only be good.