Friday, August 28, 2009

STIGMA AS THE ENEMY -- MENTAL HEALTH CONSUMER/SURVIVORS BEWARE

There was a major series on Mental Health in the Globe & Mail recently.

There was a lot of discussion about how painful the stigma is. Many people do not seek treatment because of stigma. They may notice issues happening within themselves, and then the TV begins to repeat stories about people like Vincent Li that stabbed Tim McLean to death, or about some other killer that ended up happening to have a diagnosis ... smaller headlines accompanying the same story try to repeat that people with mental health problems are LESS likely to be violent than people with mental health problems. So, if this is the case, why mention the mental health diagnosis at all? We certainly don't refer to people's hemorrhoids or gastritis when it comes to reporting their crimes, so why do they beat the mental health dead horse?

There were a number of panelists and presenters that told their stories or spoke about potential solutions for the mental health crisis in Canada which resulted in a report from the Senate Committee on Social Affairs, Science and Technology entitled Out of the Shadows at Last. I read the entire report. While it did highlight some important components to mental health, it did not really give a lot of answers as to what to do about the stigma, other than suggested the latter established Mental Health Commission to embark on some campaign to end it. There are some attempts out there to try to compare people with mental health problems with persons with diabetes, but unfortunately, that isn't working. If it worked, it would have worked a long time ago, and we not be faced with a continued stigma that even prevents many persons with mental health disabilities from entering the workforce, engaging in relationships or doing other "normal" things. The media images don't show mental health clients doing "normal" things -- they are always portrayed as violent or completely incapable of looking after themselves.

In Helen Henderson's regular Toronto Star column, she referred to a British study where it was shown that one in eight persons stated they did not want to knowingly live next door to a person with a mental health diagnosis. Further, this same study revealed that over one third indicated they did not believe people with mental health issues were entitled in the same way as others to a paid job. Similar studies have been done in Canada that have also revealed that many people would not knowingly engage a professional like a doctor or a lawyer if it was known that the person had a mental health diagnosis. So, what incentive is there to get help anyways?

There are a large number of working people I know, many in the professions, that have told me in confidence that they have suffered from depression, bipolar disorder or some other diagnosis for many years, and to maintain confidentiality, they seek help from a professional in another region, as opposed to getting it here. These people are not homeless. They are not on ODSP (although a couple of them I am aware have been receiving a partial supplement from ODSP, as they work -- but they keep that to themselves too). These people are living independently and do not need "special housing" of any kind. They, like everybody else, needs a home that is affordable, with a door that locks, a roof that doesn't leak and enough space for them to enjoy their day to day living activities.

One of them was in my office the other day and we were talking about the Registered Disability Savings Program and he wanted to know how to get it. I advised him that he would need to qualify for the Disability Tax Credit first, then I explained what happens once they become eligible for the program. It is actually not a bad program for people with serious physical disabilities, as they do not need to stigmatize themselves by applying. However, for somebody with a mental health problem, they need to show that 90% or more of the time, they have a marked restriction in thinking, perceiving and/or remembering, which would reflect more of a neurological condition, although the examiners for the purposes of qualifying people would accept arguments involving problem solving, capacity to live independently, etc. as part of their evaluation for eligibility for mental health disability.

The problem with this is that if one values their status as a professional, a student or perhaps, even an executive or manager of an organization, accepting this definition of themselves would render them unemployable, which is something most of my professional friends do not want. They do not want to face a Fitness to Practice committee of the Teacher's College or other professional regulator that would somehow question one's capacity to carry out their profession, if they allegedly have "marked restrictions" in these areas. Of course, as soon as my friend went through my literature on the topic, the whole question of the RDSP became moot. The one gentleman who receives a partial ODSP now knew this would not work well for him, thus forcing him to live within the restricted means of that benefit.

People with mental health problems CAN get the Disability Tax Credit. I have appealed many cases successfully in the past; however, in not one of these cases, was the subject able to work. In fact, even in these cases we had to prove severity. These folks had problems managing their money, handling their personal hygiene, using public transportation independently, as well as being unable to handle stress - thus, the problem-solving issue. Some of these people were relatively high functioning, such as the case with Buchanan v Attorney General of Canada, but in the end, his case was proven but he was not able to work, and had to be cared for by his wife. The new 'mental health consumer/survivor' as they call themselves today wants to be independent, competent and functioning as a human being to the extent possible, and in most cases - if analyzed at the surface, they certainly wouldn't be eligible unless they met the criteria of my successful appellants in the matter.

If somebody were injured in a car accident, for example, and ended up in a wheelchair, or if they had only 20% of their hearing and required sign language or other adaptations, then the stigma of applying for and receiving something like this isn't there. The examples given in the Canada Revenue Agency guide appear to favour physical disability over mental disability and this is post-review of the criteria, despite what some progressive mental health organizations might like to pretend they have accomplished on people's behalf. To me, this should be based exclusively on additional costs - direct or indirect - as a result of having the disability. This was in fact the original purpose of the credit. However, a high functioning consumer/survivor that is working, but needs to pay out of pocket for psychological counseling services isn't eligible. A high functioning professional with epilepsy that cannot drive due to seizures is not eligible. This can be a very long list indeed, as we can all cull out examples from our own experience.

One of the other issues faced by consumer/survivors is that they are too often chronically unemployed or under-employed regardless of their educational attainment. In a study cited by the Global Business Roundtable on Mental Health, employers tend to under-estimate the number of people they have working for them that could possibly be consumer/survivors. In this study, the figure estimated was almost always under 5% - when the general figure given is that one in five persons at one time or other experience a mental health problem, according to the Canadian Mental Health Association. When they do have problems, they are not usually accommodated, but instead sent on disability leave. If the employee is fortunate enough to have a long-term disability insurance plan, they will at least not be forced into poverty, like so many thousands of others. The loss of productivity is shameful and dispiriting.

Some consumer/survivors think it is a good idea to get consumer/survivors to work in a consumer/survivor-run business. To most of my friends I spoke of earlier, this is NOT a good idea, as one is permanently labeling themselves and later restricting their employment options, as research and experience has shown that society has not yet progress far enough to recognize the skills and talents of people without the label first. However, for those consumer/survivors who may never work again in a "normal" job, it may be an option for them. If they can be taken off or substantially off disability benefits, that is even a better thing over the long run.

So, it seems that people still do not want to accept people who directly experienced the services of the mental health system. How does one go about resolving that? This is an age-old question.
I, for one, do not like the term "mental illness", not only for its logical inconsistency, but it does contribute to the stereotype of incapacity. Moreover, there is no actual peer-reviewed research that definitively ties mental health diagnosis with a specific physiological cause. This is not to say there is no value in the use of medication, as many consumer/survivors are helped by the different medications prescribed for their condition. Because a medication may "work", it does not mean it corrects a physiological condition, but may provide symptom relief in other ways, such as a person suffering from a major headache taking an Advil. Again, as always, one needs to be informed about their medications and ensure they try different ones before they settle on a cocktail that may eventually be proven to be most effective over time.

But not all so-called "mentally ill" respond to medication or need it. Medication is just one part of an array of services, or weapons, against the problems of the condition. Alternative therapies help many consumer/survivors, as does some forms of psychotherapy. When given a wide range of choices, understanding the benefits and drawbacks to each, a consumer/survivor will eventually find their way. But, to label them "mentally ill" automatically generates a picture of somebody who is "mentally defective" or "mentally incapable", whereas the focus is on what the person cannot do, as opposed to what they can. Advocates attempting to "educate" on mental health issues and to eradicate stigma should take this issue into account.

Nor are persons with "mental illness" likely to be homeless as a direct consequence of their condition either. Unfortunately, the media and even many social workers tend to paint this picture of their clients, as people who are not capable of caring for themselves. Earlier, I referred to the Out of the Shadows at Last report from the Senate. Various deponents slated the percentage of persons with mental health disabilities as unemployed or underemployed as 75 - 90%, which also explains a lot. When you are unemployed, especially chronically so and without access to long-term disability under a private plan, you are forced to impoverish yourself in order to be eligible for the remaining programs, Ontario Works and Ontario Disability Support Program. Neither program pays well and a single person, even on ODSP is several thousands of dollars below the poverty line.

I spoke to a homeless gentleman named John, here in the city. He supposedly had a mental health "history", but he chose homelessness over starvation, because he knew he could not afford both housing and other basic needs on ODSP. As such, most times when I seen him, he was enjoying a meal of sorts. To me, it's the consequent poverty that often arises out of discrimination and stress from the job market that leads to homelessness, not the other way around. Can you live on $572 a month and cover housing, groceries, clothing, transportation and other needs with that? My suspect is that most of the homeless are like John. The only ones where I actually feel their disability itself may have played a part are those that are addicted, as many would "blow their rent money on drugs". For those folks, we simply dry them out and get them treated and housed, but for somebody with only a mental health problem, get them enough money to live on or housing they could afford - period.

One of the consequences of linking so-called "mental illness" itself to homelessness is the danger of it translating into social policy, whereby one's liberties are once again at stake. Proponents of this "model" tend to favour forcing people into mental health treatment -wanted or not - effective or not - on such persons and keeping them under some kind of prison-like condition in the community. They would be under curfew, forced to share their accommodation with others, often with worse problems than their own, and forced to take medication at the risk of being evicted if they don't. While this policy may keep some people on their medication, it does not necessarily "cure" them, nor does it help them progress to citizenship status that we all take for granted. You need to ask yourself if YOU want that kind of quality of life FIRST, before you suggest imposing it on others. Nevertheless, liberalizing mental health incarcerations and follow-up supervision has NOT reduced the homeless numbers one bit.

Instead of attacking people for what they are labeled as, one needs to view all people for who they are. People sharing the same diagnosis are two very different people with different needs, interests and abilities. But nevertheless, they are people first. It is high time we start to demand treatment from mental health professionals and their advocates that assume they can eradicate the stigma by telling everybody how poor John is crazy, hopeless, incapable and delusional, so he becomes homeless ... How does this advocacy make John look like a person, other than distance his problems from those of yours and mine? Instead we need to stop the labeling and let John speak for himself. We might learn something.

Your thoughts?

2 comments:

wheelchairdemon said...

When will they investigate the stigmatizing actions of the psychiatrists and the ones who work in the medical profession? They're not all bad, there are some very good doctor's out there.

But when one or two steps out of line and practices in a way that is discriminatory, there is very little the person who has been deemed mentally ill can do.

They simply will not be believed because of the misunderstandings about what it means to be mentally ill. Many see one who is mentally ill as being 'out-of-touch-with-reality' so they won't be believed.

Well done Angela. Keep writing about this very important stuff.

Freecyclist said...

I've got to say I love your blog. Sorry I don't have much to add other than kudos for now.