Tag Archives: Blogging Against Disablism Day

“You Can’t Be in Society Like This.” #BADD2015

Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.

Mental Illness Is Real Illness Too #BADD2014

When I signed up to participate in Blogging Against Disablism Day 2014, I originally intended to write a semi-academic post on what it means ot be disabled and who can identify as such. Then I read Kees Kooman’s Dutch book on chronic fatigue syndrome (ME/CFS), which is aimed at advocating the idea that ME/CFS is a physical rather than psychological illness. Fine with me – there is a lot of evidence that ME/CFS is a physical illness. What bothers me, however, is the idea, propagated throughout the book and in many other places within the chronic illness community, that a physical illness is somehow more real than a mental illness.

I have a mental illness. I also have largely unexplained physical symptoms, which the doctors for now call probable irritable bowel syndrome. IBS, like ME/CFS, is an illness with clear physical symptoms which however have not yet been explained. This doesn’t mean no explanation will be found – many cases of “hysteria” in Freud’s era were later found to be brain tumors, after all.

However, what if IBS and ME/CFS are actually psychological? Does this mean that we don’t want to get better, as Kooman continually suggests. In my experience, living with a diagnosed mental illness, it doesn’t.

I see this kind of ableism towards the mentally ill everywhere. I have met many autistics who resist the idea of autism as a psychiatric diagnosis. While again I am on their side, their arguments discriminate against the mentally ill. It isn’t like mentally ill people always need to be pushed into independence, while autistics and others with neurodevelopmental conditions need lifelong support.

In case you’re wondering why I care, here’s why. The Dutch Long-Term Care Act, which is due to take effect next year, originally excluded those with psychiatric conditions (which I’m assuming includes autism without intellectual disability) from care. People with mental illness needed to get care and treatment through health insurance and locally-funded social support. The mental health platform, supported housing alliance and some other stakeholders fought this exclusion and it seems now that those who’ve been in residential treatment for at least three years on end, will qualify for long-term supported housing. I would qualify under this condition, but the large number of revolving-door patients, who are constantly being admitted, discharged and readmitted, wouldn’t.

The mental illness means not wanting to get better idea also has practical implications for treatment. People with certain mental illnessses, like personality disorders, are already stigmatized for being just a pain in the butt. I have been told many times that I’m manipulative, attention-seeking, and just having behaivor problems that I need to overcome. Of course it is wrong to assume the same of ME/CFS and IBS patients, but why in the world do they need a physical cause for their illness to claim they’re truly suffering?

Let me make it very clear that I’m not saying that ME/CFS is all in your head. I’m saying that if it were, that still didn’t mean you don’t want to get better. Symptoms are real, whether they’re psychological or physical and, if physical, whether a medical cause can be found or not. As a person who has been accused of imagining a mental illness, I want to say that, unless someone is malingering (ie. faking for external gain), it doesn’t matter what the cause of the illness or disability is in terms of whether it is a real illness or disability. Whether you strive for the illness or disability to be cured, by the way, doesn’t determine whether you’re ill or disabled eihter, but that is beyond the scope of this post.