Tag Archives: Advocacy

Y – #AtoZChallenge on Mental Health

Welcoe to the letter Y post in the #AtoZChallenge on mental health. This was definitely the hardest letter of all. In fact, I cheated a little, because I have only one word and it’s practcally unrelated to mental health. I use it to talk about an important topic in mental health though. Here goes.

Ypsilon

Ypsilon is of course the Greek letter from which the Latin Y is derived. However, it is also the Dutch organization for family members of people with schizophrenia and other psychotic disorders. Like I said, it’s a little out of left field, but I want to use this word to discuss the importance family plays in severe mental illness and recovery from it.

A few years ago, there was some debate that revolved around the question whether organizations of families of patients should receive government funding, or whether it should only be organizations of patients themselves. Ypsilon spoke up, saying that people with severe mental illness cannot necessarily advocate for themselves. Never mind that there’s an organization for people with schizophrenia and related disorders too, called Anoiksis.

Some other organizations, like the Association of Manic-Depressives and Relatives (that’s the literal translation of the Dutch name), allow both patients and family to be active members in the organization. I don’t know how each group is represented on the board of directors. However, this organization makes it clear that patients and family should really work together towards a common goal. Note that bipolar disorder is often as severe a mental illness as schizophrenia, so Ypsilon’s argument that people with severe mental illness can’t advocate for themselves, holds no ground.

Family are, of course, important in people’s mental health recovery. However, it’s still the patients who have the first-hand experience of mental illness. As such, they should always be at the center of their recovery process. Ypsilon is an okay’ish organization in this sense, often cooperating with Anoiksis and having destigmatization as a goal. Other organizations, however, often do not value patients’ input.

My #InvisibleFight for Mental Health #IIWK15

Today is the start of INvisible Illness Awareness Week. I already shared a post on ths year’s theme, my invisible fight, last week. This was about my fight for a correct diagnosis and treatment of my physical symptoms.

If all goes as planned, I will be participating in a 31-day writing challenge in October on the topic of mental health. I have lived with mental health problems pretty much all my life, though I didn’t get into the care system till 2007. In today’s post, I’m sharing my fight for proper mental health care.

I have had a number of diangoses for my mental health problems over the years. At first, in 2007, I was diagnosed with an adjustment disorder caused by the stress of my living independently while being multiply-dsabled. I was hospitalized on a locked psychiatric unit and stayed there for 1 1/2 years. An adjustment disorder can only persist for six months after the stressor has gone (so after I’d been hospitalized), so I had to be diagnosed with something else eventually. My new diagnosis was impulse control disorder nOS. Several years later, I got diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) and post-traumatic stress disorder (PTSD). These finally got changed to borderline personality disorder in 2013.

It’s been a long fight to get the care I deserve and the fight is ongoing. In 2008, when on the locked unit, I was treated with seclusion or threatened seclusion whenever I acted even slightly irritable. I wasn’t told that, being an informally-admitted patient, I had to give consent for this treatment. My problems were treated like willful misbehavior, even though my diagnosis of impulse control disorder should suggest the behaviors were at least to an extent beyond my control.

I had a horribly authoritarian social worker at the time. She was mostly in charge of my care, because I was at this unit awaiting appropriate long-term residential care. At one point, when I objected to applying at a certain supported housing place because I didn’t meet half the admission criteria, she threatened to get me a guardian. Not that my parents, who would’ve been the most likely choice for guardianship, would’ve stood in the way of my making my own decisions. I have said many negative things about my parents, but one positive quality of theirs is that they allow me to be in charge of my own life.

I had to fight to be admitted to a resocialization unit in 2009. I first had to fight my social worker, who wanted to transfer me to a low-level supported housing placement instead. That was just too big a leap. I also had to fight the treatment team at the resocialization unit, who were skeptical I’d be able to cope on an open unit.

Once at the rsocialization unit, I got better treatment than I’d gotten at the locked unit. However, I didn’t get much better. Eventually, medicaiton was suggested. This was a huge step, as the doctor at the locked unit had always ignored my questions and suggestions about possibly going on medication. My antipsychotic is truly a lifesaver. Its dose had to be increased several times and an antidepressant had to be added, but now I’m quite stable.

In 2012, when I’d been diagnosed with dissociative identity disorder for some years but was noticing my psychologist didn’t have a clue how to treat it, I took it upon myself to find a suited therapist. I E-mailed around, was rejected many times, but eventually found someone. Unfortunately, by the time she had a spot for me, I’d transferred to my current institution and my diagnosis had just been changed to borderline personality disorder.

As the years passed, I got to know and love my husband and we eventually married in 2011. We originally weren’t planning on living together, but early this year, I changed my mind. We’ve been working towards discharge for me ever since. Thankfully, my psychologist and social worker are quite cooperative. The fight is not yet over. In fact, now that my discharge is coming closer being probably around three to six months away, I have to fight my inner demons. In other words, I have to fight the fear that I’ll break down again, like I did in 2007. Thankfully, my psychologist and social worker are understanding of this. I am hoping that, once I am settled in at my and my husband’s apartment, I can finally get treatment for my emotion regulation problems.

Everyday Gyaan

Also linking up to Invisible Illness Awareness Week 2015: Your Invisble Fight.

Suicidal People Need Support, Not Judgment

Through my feed reader, I follow a fair amount of mental health blogs. I don’t follow any of the mainstream media and I don’t watch or read the news frequently. I did hear of Robin Williams’ suicide through the mianstream news, but anything more in depth has come to me through blogs.

I see a lot of discussiono n suicide and its reasons. “Reason” is really the wrong word, as Bill Brenner of The OCD Diaries points out that suicide isn’t a rational act. Brenner writes about the differences between long-term depression leading to suicide and a “spur of the moment” suicide when someone kills themself after a disaster, such as the 1929 economic meltdown..

I myself have experienced a mixture of the two when I’ve been suicidal. In 2007, I had the worst suicidal ideation I’ve ever had three months into living independently. My crisis appears like a “spur of the moment” crisis, and in a way, it was. I wasn’t diagnosable with depression at the time, or ever for that matter. I was labeled with adjustment disorder for lack of a better diagnosis.

This is probably too what the people killing themselves in 1929, that Brenner refers to, could’ve been diagnosed with. Adjustment disorder refers to a maladaptive response to an identifiable stressor, where the response (depressive mood, anxiety, disturbance of conduct, etc.) is grossly out of proportion to the stressor and/or causes significant distress or impairment in functioning. The condition can only be diagnosed if other mental health conditions, such as clinical depression, have been ruled out, but it is a mental disorder nonetheless.

Another condition which can come with apparent “spur of the moment” suicide is my current diagnosis, borderline personality disorder. Unlike adjustment disorder, this is considered a severe and usually lifelong mental illness, yet people with this condition who attempt suicide, especially if they don’t succeed, are even more often seen as selfish or manipulative. People with BPD are seen as attempting suicide over the tiniest thing, yet their suffering is severe and chronic, like the suffering of people diagnosed with clinical depression.

In none of the above cases, suicide is a rational act. People with BPD are overwhelemd by intense emotional turmoil. People with adjustment disorder cannot see a life beyond the stressor affecting them at the time. People with clinical depression, the ones who are given the most sympathy when suicidal, are, of course, overcome with depression and hopelessness. These are different emotions and thought processes overcoming different people, but the bottom line remains the same: suicide is not a rational act.

I remember during my suicidal crisis in 2007 being told that I was selfish. In a way, I was, but not out of malice. I was unable to think of other people due to being consumed with intense emotion. Being told I was selfish only worsened my depressed mood.

Remember, people who are suicidal, are in pain. They need support, not judgment. They don’t choose to burden you with the consequences of their death – and yes, I was actually told that. Guilt trips, if they do anything, make the suicidality worse. What someone needs in an urgently suicidal state, is to be kept safe and to be loved. They may understand your point of view once they’ve climbed out of the depths of their suffering. If a person is at the stage of comtemplating suicide, supportive talking can help. If they’re acutely suicidal, all you can do is call emergency services and make sure they’re kept safe and sit by them until they hopefully get out of this state. It’s as sad as that.

Sensitivity Is a Good Thing

“You are too sensitive.” I and other people with mental health problems hear it all the time. I was raised with the idea that I should be more laid-back. Now I can see that being laid-back is good, but when it’s used to mean not to react to wrongs in our environment, it’s not so good.

Over at Pride in Madness, there’s a post on being sensitive. Its main point is that sensitivity used to be a positive trait. People who care about the world around them, used to be described as sensitive. Now, it’s used to mean “overreactive”. We easily forget that people who fought for the rights we now have, used to be seen as sensitive and overreactive, too. Women’s rights activists were diagnosed with “hysteria” as a way to silence them. This is a way for the dominantly male, White, heterosexual, non-disabled culture to keep its members in a privileged position. And this is exactly why we need sensitive people.

Everyone is privileged in some way. I remember last year considering the Black people protesting the St. Nicholas celebration in the Netherlands because of its association with Black slaves, overly sensitive. That was a mistake. I don’t promise I will never make this mistake again, and so I can see why men make the mistake of calling women overly sensitive and non0disabled people make the mistake of calling the disabled overly sensitive. This is, however, exactly why we need reminders from people like the author of Pride in Madness that sensitivity is a good thing, and that we need people who are sensitive to the wrongs in the world in order to make them rihgt.

#AskAwayFriday for July 4, 2014

Today, I am pleased to participate in #AskAwayFriday again. This time, I partnered up with Carol Graham from Battered Hope. I know some people say I’ve overcome a lot, but when I read Carol’s blog, I was astonished at all that she’d endured and how she still manages to keep such a positive attitude. Check out her blog and get to know her through the questions I asked her. Below are my answers to Carol’s questions.

1. You were born the same year as my daughter. She was two months premature. My heart reaches out to you and I know you have had some incredible challenges in your young life. What challenge are you the most proud of overcoming?
Surviving prematurity against all odds. That may not be something I remember, but without overcoming this challenge, I wouldn’t be here.

2. As an advocate, what are some ways that you have raised awareness to help the mentally ill?
Mostly blogging. I’ve also been in a recovery group, which is a group where mentally ill people help each other on the path to recovery. Recovery, here, is not cure, but living a full life in spite of mental illness.

3. Do you have any brothers or sisters? If so, please tell me about them.
I have one sister. She is two years younger than me, so now she’s 26. She is about to earn her Master’s degree in history, for which I admire and envy her. I don’t really know what else to say about her.

4. You have been living in a facility since 2007. What is the most difficult part of institutional life?
Having the staff make decisions about my daily life. Institutions now claim to be all about rehabilitation, which in theory means the patient directs their own life. In practice, it means staff tell you to be independent in practical skills but still make important decisions for you.

5. What is the best part?
The day activities.

6. Do you have any hobbies other than surfing online?
Writing of course, but also reading non-fiction and autobiographies (I’ll be sure to check if yours is available as an ebook). Oh and crafts. I love cardmaking, polymer clay and jewelry making.

7. If you were not limited by finances or any disability, how would you like to help others who have experienced similar anxieties?
I would start my ideal supported housing and working project. It would be similar to workhomes for autistic people (where they can do day activities close to home), but it would be all about clients truly directing their own lives, with staff available to meet the clients’ needs and help them have a comfortable (as opposed to productive) life.

8. You said that you were legally blind. Do you have a guide dog?
No. I would like to get one someday though. The largest guide dog school in the Netherlands also trains service dogs for autistic people, so I’d like to get a guide dog who is also an autism service dog.

9. I admire your courage and positive attitude towards life. How do you encourage people with similar problems?
I don’t know that I have all that positive an attitude. Honestly, I have no clue how I encourage others. If they’re inspired by my writing, that’s great.

10. And finally, a question I ask anyone I meet for the first time — tell me about yourself in FIVE words.
I am creative and imaginative.

Pink Is a Color

There’s a lot of pooha against girls wearing pink lately. Apparently, dressing girls in pink is limiting their future success. Blimey. As the author of Parenting Highs and Lows says, pink is a color. No feminist in their right mind would say that having black skin limits people’s future success, even though in our still pretty racist society, it does. And I know you can change what clothes you wear and not what color your skin is, but so what?

In my opinion, firstly, this is holding girls and women accoutnable for the stereotypes created by society. When I was still active in feminist circles, I learned that making the minority feel responsible for defeating society’s steretotypes, is discrimination. Besides, if girls should not wear pink because it limits their future success, this is only perpetuating the idea that girls wearing pink should not be successful. This is ultimately counterproductive.

I haven’t even touched on what it is that girls are being unsuccessful in when they’ve been wearing pink. It is said to be limiting their careers. As if the only successful women are those who have a career outside the home. This is the mostly male, White, able-bodied society’s norm of success, and women’s rights include the right not to conform to this norm. The so-called feminists who are encouraging people to stop dressing girls in pink because it limits their ability to conform to the societal notion of success, are merely perpetuating the stereotypes they’re meaning to defeat.

Now I for one am not a big fan of pink. I never quite liked the color. I also do not agree with the idea that girls should wear pink, or that real girls or boys wear any color or even sort of clothes in particular. That’s stereotypical. People of any gender should be allowed to wear whatever they want, and if that is perceived to limit their ability to do whatever they want in life, that’s discrimination. Blaming the person being discriminated against, is allowing the discrimination to continue.

The As of My Life

My Interet access got cut off last week due to data overuse. I have a mobile USB modem, similar to a cellphone Internet connection, and until recently had virtually unlimited data use. That was changed to 1GB/month without my knowledge (I’d forgotten to issue an address change). I used this up, plus E100,- in extra data use, within three days and was cut off. Today is the start of a new month, so I have an Internet connection agian, though I have to be very careful not to overuse this time. I obviously switched ISPs, but the new modem won’t be delivered till sometime in the coming week. This is the reason I’ve hardly been online – I published Wednesday’s post while at my husband’s -, and I’ve not been able to catch up with other bloggers much.

You’d think I’d have a ton to write about with a week of Internet-free time. Well, since I get most of my inspiration online, I don’t. Today, I am therefore writing up the ABCs of my life, or at least the As. I got this idea from a post I came across while browsing PoCoLo, a general interest linky. I go with the letter A only because I can’t be motivated to think of something for every letter, and I don’t intend to post a follow-up.

Acceptance: this is a tough one. I strive for and advocate for acceptance of myself, autistics, disabled people in general a lot, but do I accept myself? I honestly don’t think so.

Adjustment: related to acceptance. Adjustment is a constant process, because life constantly changes. You can adjust without accepting the new life situation.

Advocacy: what I do a lot on my blog, but fail to do in daily life. My husband has pushed me to stick up for myself in regards to the difficulties I’m facing in the institution, but I don’t. I fear that I’ll lose my support if I do.

Alters: I still feel them, though not as much as I used to. Maybe they were fake all along. Maybe they’ve gone in hiding, being told they’re fake so much over the past year. I don’t know.

America: not really relevant anymore, but I dreamt of living there when I was a teen. Still sometimes wish I could live in the U.S., but I know I never will.

Autism: that one is obvious, though people around me still like to question it. In this sense I can totally relate to Joanna, who inspired me to write this post.

Autonomy: what I ultimatley strive for. Autonomy means being able to direct your own life. This is not the same as not needing support or care. You can be perfectly autonomous while needing lots of help. What it means is making your own life choices and taking responsibility for them. I really wish the care system, with its mouthful of deinstitutionalization and self-reliance, would help clients on the road to true autonomy.

Finding Answers in Disability Limbo

A few months ago, I wrote a post about my need to belong somewhere within the disability community and my possibly intruding upon communities I don’t belong to. One such community is that for brain injury patients. As far as I was concerned, “brain injury” was always followed by “sustained after birth” or preceded by “traumatic” or “acquired”. Yet brain injury can occur at birth too. Only then it’s not called brain injury, right?

Since my autism diagnosis is being questioned again, I’m feeling an increased need to figure out what exactly is wrong with me. In part, this entails putting a name to what I have. Are my motor deficits diagnosable as dyspraxia, mild cerebral palsy, or are they not diagnosable at all? Am I autistic or not? Then again, putting a name to my disabilities is but one of my quests. As I’ve experienced, most communities are open to those with an uncertain diagnosis, so it’s not that I need to have a diagnosis to fit in with a support group.

Back when I was diagnosed with autism, I didn’t want a specific ASD diagnosis. The psychologist, who ultimately gave me an Asperger’s diagnosis anyway, said he wanted to do an assessment of my strengths and weaknesses. I don’t know whether a quick DSM-IV interview amounts to that, but to me, a lot of questions remain unanswered.

It could be my slight neuropsychology obsession, but I want to know why I have issues I do have. I want to understand, in a way, why I can’t function at the level I’m supposed to given my intelligence and verbal abilities. Is it normal to be unable to load the dishwasher but able to write a lengthy blog post? I don’t think a diagnosis, whether it’s autism or brain injury, will answer this question per se, but what will? It is most likely that I have quite bad executive dysfunction, but can this at all be validated? Should it?

It isn’t purely that I’m overanalytical and want to understand my every bit of brain function. It’s more that I’m struggling terribly with being seen as more “high-functioning” than I am in daily life. Not that I want to reinforce the stereotypes surrounding the Asperger’s diagnosis, but my mere existence won’t defeat them either, and I’m sick and tired of having to prove myself.

Inclusion vs. Insertion or Integration

On a post on disability acceptance, someone commented that insertion is not the same as inclusion. This means that putting disabled people in mainstream classrooms, in the community, etc., does not automatically lead to them being accepted into that comunity. In this sense, there are parallels to the racial and gender equality movement, but there are also differences. The parallel involves the fact that, just because for example African-Americans were finally legally allowed to sit in the front of the bus in the 1960s, doesn’t mean they weren’t bullied into the back anymore. The difference, which to soe extent applied to certain groups of ethnic minorities too, is the need for accommodations to be made to fully include disabled people.

There is another word that is frequently used in disability situations and which is commonly used for ethnic minorites: integration. Integration involves not just insertion, but the expectation on the part of the majority that the ethnic minority or disabled person adapt to the majority. In a sense, this is somewhat opposite to inclusion, where the majority makes reasonable accommodations for the minority. It is also contrary to acceptance, because, while the majority tolerate the minority once integrated, they won’t accept them the if they don’t meet up to the cultural norms of the majority.

I have often struggled with the social model of disability, because it to some extent ignores the fact that disable dpeople aren’t just as capable as everybody else – an argument used by the women’s and African-American civil rights movements to claim equal rights. With equal rights, after all, come equal responsibilities. To draw a parallel to ethnic minorities again, immigrants to the Netherlands are themselves responsible for making sure they learn Dutch civics and language. I do not personally agree with this, but it is reasonable from a conservative, small government perspective, which is currently holding the majority here. Is it unreasonable then to insist that a person with a disability put every effort into becoming as non-disabled as possible? My heart says it’s unreasonable, but my head is having a hard tiem finding arguments for it.

Blog for Mental Health 2014

Just a few minutes ago, I discovered Blog for Mental Health 2014, and I was excited to participate.

Blog for Mental Health 2014

I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.

Now, why am I blogging for mental health? Those of you who’ve visited me before, will know, but for those who don’t, here’s a little about my lived experience. I have suffered from mental health problems for a slong as I can remember. My first encounter with the mental health system was in 2006, when I was being assessed for and eventually diagnosed with autism. I later got additional diagnoses of dissociative identity disorder and post-traumatic stress disorder. These diagnoses were replaced by a diagnosis of borderline personality disorder in 2013. I have resided in a mental institution for over six years, and have met many people with various mental health conditions this way. I have also experienced first-hand the stigma that comes with mental illness. Therefore, I blog to raise awareness for mental health this year.