Posted by The Advocate at 10:32 PM
Monday, March 23, 2009
Our society’s progress on the rights of persons with disabilities is likely akin to what the rights of African-Americans were before Rosa Parks did her famous stand down on the city bus and refused to move to the back, as they were required then. African-Americans received a major boost with the election of President Barack Obama. I am not saying things are now perfect for this group, as still there is far too much poverty, too much racism and too much violence in this population. However, they are many steps away from the rights of persons who are differently abled?
In Hamilton, Ontario, a 22-year old man was lured to an address in a run-down neighbourhood in that city by four males, then subsequently locked up in the attic and beaten within a mere inch of his life. There are reports that he’d been raped, forced to eat his own feces and starved. It turned out this man was someone with various disabilities. An informant in my community told me he suffered from major epilepsy and mild intellectual disabilities. He grew
up in several foster homes and of course, when he aged out of that system, they left him on his own. I am not sure of the background of this situation, how well the offenders knew this man and if they were aware of his vulnerability. Nevertheless, they certainly took advantage.
When I was younger, I used to do enumerating for the elections (yes, I am old enough to remember when actual humans used to go knocking on doors). One building on my route housed a number of adults with mental and intellectual disabilities. After I knocked, the woman who answered attempted to push me away by telling me that none of “these people” voted. I phoned the Returning Officer at that time, who then advised me that the owner of a residence like this cannot turn
away enumerators, so we returned and pushed ourselves in and interviewed a number of people, many of whom wondered why the manager tried to chase us away.
Nevertheless, a few months after that, a man who happened to live in that home came to a club I was running at the time, complaining that he was fed only one meal a day which consisted of bologna sandwiches and tomato soup, sometimes weiners. When I stirred the pot on the issue (as I never go without stirring pots when I have the chance), some social worker came to my building to try to discourage me from acting further … I hated social workers since, even
though it is one of the professions I worked in for a time.
In another situation, another group home reached the news with workers on strike over what they found were appalling circumstances they found their resident clients living in. They brought attention to the media about spreading a single can of tuna over fifteen sandwiches and handing a man a bus ticket to get to the hospital when he was suffering from chest pains. This man was quickly diagnosed as having a heart attack, but it was too late. He died before anything
could have been done for him.
Some of these incidents and many others sparked an enquiry led by Prof. Ernie Lightman, of the University of Toronto, who led the Enquiry on Unregulated Residential Accommodations. I did some work with this enquiry at the local level, interviewed many people who lived in these types of “homes” across the city and made policy recommendations. Steps were taken towards the implementation of a Resident’s Rights Act and later under a subsequent government, board
and care homes were given some protection under the then Tenant Protection Act.
While these incidents apart from the incident in Hamilton took place in the early 1990’s, nothing has changed at all for persons with disabilities. People with disabilities are still viewed as being “less than”, “less skilled” and “less valued”. This dangerous thinking that preceded the Holocaust whereby hundreds of thousands of persons with various degrees of disabilities were experimented upon, then disposed of (well before the Jewish community was targeted)
… still exists in its most mildest forms. It remains in our laws. It remains in our government programs designed to “help” people with disabilities. It remains in how people with disabilities continue to be viewed by the “able-bodied public” that believe they pay taxes to people that don’t want to work and use “disability” as an excuse, or at worst, they campaign for the re-institutionalization of many persons with certain types of disabilities, such as mental health.
Before we can truly address prejudice and discrimination against people with disabilities, we need to address our cultural assumptions. We need to address the pictures that come into our minds when we hear the term “persons with disabilities”. For the able-bodied, most see the wheelchair, the walker or perhaps, even the white cane. They believe we should make sure people get access to buildings, restaurants and other destinations so they can go where able-bodied people go. This is the enlightened view. However, even among the enlightened, we fail to see how these same people, as well as many other persons with other types of disabilities that may prevent them from driving, as an example, can get to many of these places in the first place, even if such destinations represented the epitome of accessibility.
Able-bodied people take a lot for granted. They trust that when their brain directs their legs to move and to pick themselves up, they will be able to walk across the room, climb those stairs and read from a regular book or magazine with ease. It is when we lose some of this ability do we realize what we had, how precious, for example, our eyesight, mobility, agility and other physical attributes represent with respect to ensuring we have a quality of life. If this happened to you, I am willing to bet that you would want support services, assistive devices and other systems to “kick in” to allow you to take
part in your favourite activities. If our home is no longer useable for us, we want somebody to help us set it up so that we can continue to live there. We don’t want to be shunted off to some nursing home.
If your problem is mental health related, and yes — one in five of us do experience mental health issues at some point or other in our lives. Of that one in five, 10% suffer from what one might identify as a “severe mental health problem”, whether it be named schizophrenia, bipolar mood disorder, generalized anxiety disorder, post-traumatic stress disorder, etc. If you have never experienced the serious side of things here, it is too easy to believe the stereotypes
… those being that people with serious mental health problems are either violent and unpredictable, or they are bumbling idiots who are unable to care for themselves. These two are the predominant themes that describe people with mental health issues in the media.
In the 1990’s, I managed a local mental health agency, then later moved to work in the policy area. Very few of the affected that came through my door were either violent or bumbling idiots. However, in many cases, their medications often made them look different, or their self-esteem was so low that they did not feel they were capable of ever working again. In my life, there are many examples of people I met even with the most severe of mental health problems who have picked themselves up and made themselves into community leaders. Bill McPhee, publisher of Schizophrenia Digest, and recently a publisher of another
magazine geared to people with mood disorders, is not shy about talking about his beginnings … as a man who was diagnosed as schizophrenia himself. While I may not necessarily take a pro-medical approach, as many of the articles in his magazine depict, he also includes lifestyle issues, advocacy issues as well as spiritual commentary. He has been a public speaker at numerous events before a wide variety of audiences.
Bill Wilkerson, previously an insurance executive, co-founded the Roundtable on Mental Health and the Economy. Former federal Finance Minister Michael Wilson was also part of this initiative. Michael Wilson’s interest in the initiative was personal. His son Cameron was reported to have committed suicide at such a tender age when he became frustrated at not being able to find work, despite his education and skills … he was apparently diagnosed as having a bipolar
mood disorder. Bill Wilkerson engaged many others in his initiative and together with other coalitions, the federal government eventually set up the Mental Health Commission, which is designed to help educate, research and train people in this delicate area.
However, in a recent article in the Globe & Mail, Wilkerson began to disclose his own personal interest, a long-term diagnosis of depression, something he kept well-hidden from the media until he believed it to be the right time to disclose. If somebody like Wilkerson, who has been at the top of the business echilon, and with obvious skills to bring this Round Table together, was unable to disclose his personal interest earlier in this project’s progress, one
can only imagine how others without these significant personal resources would do it.
There are barriers to disclosure. There are too many Vincent Li’s out there that commit heinous crimes that are well-publicized (e.g. Li was the man that viciously murdered and dismembered Tim McLean on a Greyhound bus last summer), and to make matters worse … it becomes well-publicized that he is declaring to “hear voices from God” that apparently directed him to kill McLean. Whether this was true or not, this does nothing for mental health advocates who are attempting to work with those others so labeled to even get them to the door to get help … we never hear of stories that counter these conclusions,
such as how Bill McPhee overcame his disability to become a spokesperson and advocate for the cause, or Bill Wilkerson, who only recently disclosed his own interest in the issue, or Michael Wilson’s recount of his son’s suicide … these latter cases are stories we need to hear more about and the Vincent
Li’s of the world, we need to hear less about.
In a recent edition of Mother Jones magazine, a section was devoted to photos taken of mental hospitals around the world (and yes … these are hospitals that operate in 2009). In the words of the publisher, it seems that once one is labeled, many people think they can do whatever they want to persons with mental health issues, whether this be experimentation with dangerous therapies, such as ECT or insulin shock, or drugs with questionable benefits, such as haliperidol, lithium and thorazine. I’m not saying that there is no place for medications in the treatment and amelioration of mental and emotional
distress. I am saying that the process or dynamic that leads to the labeling of such persons, and how such treatments often become drilled down, are in fact, done to as opposed to done with the person in mind. Often times, people can become further disabled by the treatments themselves.
Culturally, people with disabilities, including people with mental health issues, are not looked upon as credible people in their own right. As a result, many members of the public misunderstand who these people are and assume they either have no skills, or are incapable of learning new ones. Sadly, when
I report my own personal knowledge of people in various professions who have had mental health diagnosis, people don’t believe me … and I shield their names, as these folks do not want it to be popularly known that they suffer. One lawyer friend of mine told me he wanted the “secret” sealed, as he feared
public knowledge of his “condition” would lead to questions about his ability to practice. While many of these fears may be unfounded, they are realistic enough to know that members of the public may see it differently – that they’d rather not be treated by a doctor they know has been treated for mental health issues or to have a lawyer handle their civil case who was hospitalized a few years ago for a bout of depression … there are surveys that prove
that public opinion is real.
Another lawyer I know has a severe physical disability; shortly after he passed the bar, many of his colleagues challenged his ability to work as a professional, simply because they saw the wheelchair and the breathing apparatus, but not the man. Some people say we need a champion, but nobody wants to be the first one. Nevertheless, the prejudice and stereotypical ideas about persons with disabilities continue.
Even when it is known what education and skills a person with a disability has, employment workers can often be their worst enemy when they attempt to work with them at their career development or transition (in the case of an injured worker, for example). Telemarketing and call centre work seems to be the most sophisticated work a person like this is referred to, as the worker believes the person with the disability wouldn’t handle the “stress” of a more
advanced position. Well, did they ask? Likely not. This is so analogous with the scene where a person in a wheelchair and a temporarily able-bodied friend are in a restaurant together and the waiter approaches their table, only to ask the able-bodied person what the friend in the wheelchair wants … something
like this happened when I brought a friend of mine who was severely visually impaired, guide dog and all, into a restaurant and the waiter attempted to make me her interpreter … I just told her, “Why don’t you ask her what she wants?”. Yet this kind of scene is repeated everyday in the social work and employment agency world when it comes to persons with disabilities … they don’t know what to do with those that know exactly what they want, nor do they
know how to deal with employers that seem to deliberately screen people with disabilities out of jobs they can otherwise do quite well. To me, I always wonder why they have these jobs if they are doing nothing to connect the persons with the disability with the employer, but then again, I must be naive.
One person I know that uses a wheelchair felt that those with invisible disabilities had nothing to worry about, but after I gave him a little history of how people with mental health problems, intellectual issues, even autism, were treated, he was shocked … and realized the importance of working in a cross-disability alliance. All people with disabilities experience discrimination, humiliation, stereotyping and marginalization, although different disabilities
may attract different kinds of prejudice. Persons with mental health issues are believed to be stupid and irresponsible at best, or violent and unpredictable at worst. Persons with physical disabilities are sometimes seen as demanding, when they ask for accommodations, when in fact providing them with the same actually puts them on a level playing field with the able-bodied. Scary.
One of these days, I will write about the dangers of ODSP income support and how in itself, it acts to marginalize and isolate persons with disabilities, as well as perhaps, even shorten their lives. As an advocate for persons with disabilities, I am often a lightning rod for comments, as I always try to get people to understand there is always more to every story than meets the eye. I hear all the time from members of the so-called able-bodied public about
how people with disabilities can just do “desk work” or they often exaggerate their conditions to get welfare and then not lift a finger to “help themselves”. I hear from some people who outrightly say that “at least half of those on ODSP” are not really entitled. I always ask them how they know this — are they a doctor? Do they know everything about the people of whom they speak? The most interesting thing, however, is when something happens to them and they
reach out to our dwindling welfare state to find help to keep them from sinking, they seem to change their minds relatively quickly about what they used to say about so-called “disability people”.
The only thing we can do is to iterate the facts, which I will attempt to do in another post later on, so that the reading public can understand what hardships people on ODSP really do endure and how unintended (or intended?) consequences are killing their spirit.