Tag Archives: disabled

I Can’t Do That Anymore

16 Friday Oct 2020

Posted by in Uncategorized

≈ Leave a comment

Tags

, , ,

I attended a virtual event yesterday about mental health. I was supposed to give my input, but I didn’t know exactly when I would be speaking. After an hour and fifteen minutes, I needed to log off because adrenaline had been pumping through my body the whole time, and I was sick from it. It took me an extra dose of medication and two to three hours to get back to a place of feeling okay.

One of the worst parts of this illness is the desire to do things that I cannot do. I want to feel 100% all the time. I want to be able to speak at events, travel, visit friends and family, attend conferences and workshops, but so often, it isn’t possible for me.

It is hard to accept that I was unaware of any limitations that held me back for much of my life.  I did what I wanted to do. I went where I wanted to go. I took jobs that I wanted to do. I flew overseas at the drop of a hat. I was strong and capable and didn’t even consider that the things I was doing were difficult or impossible for some people.

Now, I live with many limitations, but the reality hasn’t caught up to my desires. I still see what I want to do and try it, and often it turns out terribly. I don’t want to be someone who never tries new things or says no, out of fear of a negative result, but when things go wrong, and people are counting on me, or I have my hopes up, I feel like a failure.

I think many people are like I used to be. They are unaware that the everyday things they do are impossible for some people. I think this makes people less forgiving when those of us with an invisible illness say, “I can’t do that,” or “I’m having trouble and need to leave.”

It is easy to judge people and consider them unreliable or flakey or incompetent or even someone who lies about why they can’t do something. I hope that I have learned from personal experience that not everyone can produce at the same level, have a busy schedule, go to every event you or me, or others can.

I need to extend more grace to those people who have a more difficult time than I do. I need to believe that they are doing the best they can. I hope others will extend that grace to me and realize that I wish I could do all the things, but that simply is a life I have to let go of and accept that I struggle mightily with so much.

Let’s try to believe what people say, show compassion, and think the best of one another. I need this reminder, and I think some others do as well.

Self-Help, Progress, and Schizophrenia

06 Tuesday Mar 2018

Posted by in mental illness, schizophrenia, stigma, Uncategorized

≈ 5 Comments

Tags

, , , , , , , , , , ,

I bought two new journals. I have dozens of blank journals with monsters, flowers, and quotes on the covers, for me to fill the pages of, but these two new journals are not blank. One is, Start Where You Are: a Journal for Self-Exploration and the other is, 52 Lists for Happiness.

I don’t know why I am such a sucker for happiness related books, journals, exercises, etc. I don’t think I am unhappy. In fact, I feel happy most of the time. If there were something I would like to improve in my life, it is two symptoms of schizophrenia and the lower back pain I feel. The two symptoms of schizophrenia I would like to lessen are anxiety (because this impacts every area of life) and a lack of motivation. The lower back pain needs no further explanation.

There are all kinds of happiness books. Why is happiness such a big industry in the United States? Is it because most people are not happy? I think that happiness books are like coloring books or self-help books (of any variety). According to Quartz, Goodreads data suggests it is mostly women who read them. (In 2017 self-help was an eleven billion dollar industry.) Maybe we think there must be a way to be happier than we are. Is it the comparisons we make on our social media accounts? Sally and Jessica always seem so much happier than I feel, maybe there is a secret to it, so we consume yet another thing trying to make our way to an ever elusive place of happiness.

The fact that I buy these happiness (self-help) books proves that I am unremarkable. I am an average, college educated, middle-aged, married, middle income, woman, living in an urban environment, and I do average, middle-aged, married, middle income, college educated, urban dweller, woman like-things. The only thing that stands out about me is that I have schizophrenia (of course, this is overly simplistic, there are a million little things about me that make me unique). But the point is, all the stereotypes about schizophrenia don’t leave room, or space, for the truth about the people who live with it. And there are many truths.

Stereotypes are tricky because there is often a small bit of reality to them that make them stick. For instance, has any mass shooter ever had schizophrenia? Yes. Has anyone with schizophrenia ever worn a tin foil hat? Yes. Has a person with schizophrenia ever been violent? Yes. But, are we referring to the majority of people with schizophrenia? No. In fact, those stereotypes refer to a very small number of people with the disease/disorder. Saying these things are true of everyone with schizophrenia is the same as saying all people with schizophrenia are middle-aged women – obviously not even close to true.

There is so much to learn about marginalized people. I never tire of reading articles about people with disabilities, the nuances of racism, the language and struggles of the LGBTQ community and all the articles/work coming out about feminism. This is one of the most frightening (bigoted, misogynistic, homophobic, racist) times I can remember living in, but at the same time, there is so much progress by some groups to further our understanding, our acceptance, and the very civil rights of various groups. I hope that schizophrenia doesn’t get left in the dust. I hope that those of us with schizophrenia will keep in step with other marginalized groups and find our feet further along the path; the path that leads to better lives for all of us.  Somewhere in that statement, there is happiness.

 

Learning Not to Make Assumptions Especially Regarding Dis/ability

23 Tuesday Aug 2016

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

≈ 4 Comments

Tags

, , , , , , , , , , , , ,

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.

I Hear You, But I Can’t Keep Up With The Disabled Community

23 Wednesday Dec 2015

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

≈ 11 Comments

Tags

, , , , , , , , , , , , , , , , ,

I don’t think of myself as the most educated and updated person when it comes to all the issues regarding feminism, racism, transgender, disability, LGBT, etc. I care about all of these issues, and I particularly care about equality, but it is hard to keep up with the latest concerns, language, etc. inside each of these movements (and I realize that many of these issues intersect with one another).

There has been a controversy in the disability community about a site I write for called, The Mighty. The Mighty is being called out for not hearing the voices of the disabled, and instead posting mostly articles by caregivers with an ablest perspective, or a mommy martyr perspective, or exploiting the vulnerabilities of people who can’t speak for themselves (don’t worry if you have never heard these terms before. I read most of them for the first time yesterday, and I felt like I had been living in a hole in terms of the disability community because everyone else was using them frequently).

And my last sentence in brackets is what has me being thoughtful today. It is true, I don’t know everything going on in the disability community, and I should, or at least I should know more. How can I claim to be an activist and an advocate if I don’t read, read, and read some more about what is happening to the very community I am a part of?  I can’t.

Besides the issues I listed before, writers with disabilities are claiming that The Mighty publishes mostly “inspo porn” (inspirational porn). People are speaking out against this because they say it simply exists to make abled or neurotypical (for information regarding the neurodiversity movement click here) people feel good about themselves, and another way to exploit people with disabilities (the idea is, we don’t exist to be other people’s inspiration).

Okay, I am beginning to deepen my understanding here. I wonder though, where does my voice belong? I am someone who has a disability, and my particular disability is supposed to be one of the most severe in terms of mental illness. I want to write things that give people with schizophrenia hope. I want to write stuff that is inspirational. My whole goal in keeping this blog is to help people see people with schizophrenia as their neighbor, or their friend, or their hairstylist, lawyer, etc.

I have a diagnosis that is often portrayed as someone who is a mass murder in the media. Rock bands use people in straitjackets and asylums to sell albums. It is common (like daily) to hear language that is insulting to the mentally ill. These are big issues to overcome, and my main goal is to get out a new message about schizophrenia, and to report the alarming statistics and conditions many people with schizophrenia live with. I don’t know if with all of that, I can also worry about trying not to be someone else’s good feeling or inspiration. I am afraid that I might be a disappointment to the disability community as a whole, and it won’t be intentional, it will just be that I feel like schizophrenia is so far behind the train of acceptance, equality, lack of stigma, etc. that we don’t even see the smoke from the engine. Until we can see that smoke, I simply can’t take on every issue in the community.

I Want My Heroes To Be Disabled

10 Saturday Oct 2015

Posted by in bipolar, heroes, hope, mental illness, schizophrenia

≈ 16 Comments

Tags

, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Yesterday when I was browsing through Facebook, there was a video/article posted by The Mighty. The Mighty posted the video (that has gone viral) to ask its members how they feel about the video and how they want The Mighty to handle this type of information in the future (meaning do they want us (as members) to see kindness to disabled people as heroism, or should we expect kindness).

I didn’t answer The Mighty on Facebook, but I couldn’t stop thinking about their question and how I feel about it. Yes, the young man in the video did a very kind thing, but it makes me sad that he is being called a hero for being kind. Have we really become so self-centered and cut off from one another that a decent act between two human beings is considered heroism?

Also, he is being considered a hero for comforting a disabled man. This is one more example, in many, where people without a disability get to take credit for being kind to the “other” “lesser” “needy” And in this way I don’t like it at all.

People without disabilities are seen and heard in every public space and in every room. We see them as the lead characters on television. We see them in every job, and at every dance, and at every restaurant, and at every event. They are in magazines, and newspapers, they are in government and in the boardroom. They are not under-represented or invisible. They are not fighting to get access or be heard. They are front and center in our culture. They are always the heroes.

I want to see disabled heroes. I want to see someone with a mental illness win some of the prestigious writing awards and residencies. I want to see people in wheelchairs as CEO’s and covered on the front of major magazines. I want to see disabled entrepreneurs and artists. And I don’t want them to be great, because they are disabled (like isn’t it amazing that someone with a disability can do this? No.)  I want them to be great because they are great. There are many disabled writers, artists, athletes, business people that are worth being spotlighted, because of their accomplishments not because of their disability.

I read an article recently by a disabled young woman and she wrote that “The disabled are not here to inspire you.” I think when considering heroes and success this is important too. Someone with a mental illness isn’t inspirational just because they get out of bed and dress in the morning, or take a shower. The disabled aren’t inspirational just because they have a job.

Disabled people are as competent and talented as anyone else.

When we get to a point when kindness is described as an event between two human beings and not a healthy individual and a “special needs” man, and when we get to the point where the success of the disabled is the norm and not the exception, that is when we have reached a balance and one group isn’t seen by the other as less-than or inspirational just for being.

We have a long way to go.

The Holocaust and the Mentally Ill

31 Sunday May 2015

Posted by in bipolar, mental illness, schizophrenia

≈ 3 Comments

Tags

, , , , , , , , , , , , ,

A few years ago, my husband and I were visiting Washington D.C. We love to see architecture, museums, monuments, and historical sites when we visit another city, so Washington D.C. is a wonderful place to visit, because it has so many treasures.  We went to see the White House, The Martin Luther King, Jr. Memorial, the Vietnam Memorial, as well as, places like the Ford Theater where President Lincoln was shot. While we were walking around the city, we stopped at every museum we ran across. One of the ones we saw was the Holocaust Museum.

When you go to the Holocaust Museum, you get a ticket and it has the time you are slotted to go in. We were fortunate, because there was a government shut-down that ended on the day we were exploring, and most people visiting the city believed the attractions were still closed. So, when we got our ticket, there was no wait, and we got to go in immediately.

When you check in at the museum, they give you an identification card. The card looks like a passport and has a picture of a person inside, and the picture in mine was of Judith Schwed.  In the photo, she is a young girl of maybe ten years old.  The little booklet tells about Judith’s life and ends with her being gassed at Auschwitz in 1944 when she was twelve years old.

I learned all this before actually entering the elevator to see the museum. A pretty hard hitting way to begin a tour, but considering where we were it was entirely heart wrenching, stomach turning, and appropriate.

I will tell you right now, that I didn’t make it through the whole museum. About half way or three fourths of the way through there were hundreds of old shoes in a pile next to the walkway. On one of the walls there was a quote from Eli Wiesel’s book, Night.  After that I couldn’t go on. I had to leave the building. It was overwhelming. The experience was so deep and dark it got into my mind and heart and was too much to continue to contemplate.

It was in that space that I first learned of T-4.

T-4 was a program developed by the Nazis to kill “life unworthy of life.”  Included in that group were people with schizophrenia and bipolar (called manic depressive at the time).  They weren’t the only ones killed though, the deaf, the blind, and disabled of all kinds were killed, eventually this program expanded to include the Gypsies and the Jews.

When I returned home, I wanted to know more about what happened to the mentally ill people during the Holocaust.  I bought a book by Henry Friedlander, The Origins of Nazi Genocide from Euthanasia to the Final Solution. In this book, Friedlander, writes that at first, people with a mental illness were sterilized (starting as early as 1934). Later, the Nazis began experimenting with ways to kill them. Before they made “showers” with gas at “killing centers” they drove those they wished to kill around in a van that filled up with the deadly gas, but this method proved to be difficult and inefficient.

Here is a quote from Friedlander’s book, “the chronology of Nazi mass murder unambiguously shows the killing of the handicapped preceded the systematic murder of Jews and Gypsies.”

There was a time, when a regime, considered the mentally ill “Life unworthy of life.”

Google T-4 for more information and you will discover it is even more disturbing than what I have written here, and its origins (not the killings), eugenics, extended past the German borders and into the United States.

*For further horrors, look up sterilization in the United States.