AMONG THE INVISIBLE ...

One day on the bus heading downtown, I met a man who appeared to be in his forties, and clean shaven. He was carrying a small briefcase and a local newspaper. We started to talk, and he was able to intelligently discuss the news, the politics of the day, and issues of tomorrow. When I asked the man what he did for a living, he told me he was on the Ontario Disability Support Program. One would not know this, unless he told you. I can only assume his disability is invisible and probably creates barriers that nobody can see, and are usually unaddressed by legislation like the Accessibility for Ontarians with Disabilities Act. He may or may not be able to work, but one would guess that he would not dare venture to explain his disability to an employer, fearing instant judgment even if he could benefit from some type of accommodation.

I also know people in the region who have disabilities that people can see. They use wheelchairs to get around, work with seeing eye dogs or wear hearing aids. They can acquire 'disability' aids from the Assistive Devices Program (ADP), and if they are on ODSP, they can get the 25% balance paid by them. That is a good thing, and there is no argument or reasoning to put a stop to this, as people need what they need to function and to participate in society, regardless of their disability. This is the same with respect to the Disability Tax Credit. At one point, of no value to people that earned little or no taxable income, the Disability Tax Credit is now the gateway to the Registered Disability Savings Plan (RDSP). This Plan is set up primarily for children and young adults that have family able and willing to contribute, and whose disability qualifies them for the Disability Tax Credit. Unfortunately, those with invisible disabilities cannot qualify for the Disability Tax Credit without almost pleading themselves incapable of living independently and making their own decisions. This applies to some people with invisible disabilities, but people with visible disabilities who could live independently, are mentally competent and even hold high level jobs, can qualify for the Disability Tax Credit.

More than 80% of the people on the Ontario Disability Support Program, or ODSP, have disabilities that are invisible, whether that be mental health issues, learning disabilities, epilepsy, intellectual disabilities, brain injuries, among many more. Most of these people, particularly if their disability is episodic, do not qualify for the Disability Tax Credit. Therefore, even if they had supportive family and a good environment around them, they cannot save for their own retirement, which is doomed unless the person wins a lottery after they turn sixty five. These people will be forced to rely solely on public pensions, or "seniors' welfare", which does not equal the poverty line anymore than ODSP makes it to the poverty line. Henceforth, after sixty-five, an ODSP recipient loses many benefits, such as dental benefits, eyeglasses, full ADP coverage, among other assorted health needs that one can argue people might need even more AFTER they turn sixty five.

At the present time, the only ODSP recipients that will be able to enjoy any kind of retirement at all are those that qualify for the Disability Tax Credit due to a largely visible disability, have family or others that are able and willing to contribute to the RDSP pot, and were young enough to receive the benefit for enough years to make it worthwhile when it started. Others applying for ODSP, including spouses, have to drain all of their retirement savings, as well as any other "rainy day" funds down to a bare minimum, and forget about ever retiring out of poverty. I can't say what percentage this would be, but I would estimate about twenty percent at the outset would benefit from the Disability Tax Credit. It is no small wonder many financial writers say that this tax credit is "under-subscribed" - it is not under-subscribed, but its eligibility criteria is so restrictive that only a minority of people with disabilities are eligible.

Even for people who are not on ODSP, but would like tax relief of this type. After all, you don't have to have only the stated restrictions to have added costs due to your disabilities. If you were a teacher, for example, with bipolar disorder, or a registered nurse with a mild form of schizophrenia, you might not even WANT to try to make yourself eligible, as your professional body might begin to investigate your competence to practice in your area, because in order to declare the tax relief for a mental disability, you have to be incapable or only able to do with help or very slowly, a number of mental functions, even if you can competently handle other functions. For example, if you are unable to balance your cheque book, you can forget about your career as an accountant, or if you have difficulties making decisions, you can forget about your career as a nurse. Yet, if your disability left you in a wheelchair or visually impaired, while these limits are definitely difficult to live with, you can still be a lawyer, a company CEO, a nurse, an accountant, or whatever, given specific software and other accommodations available to you, and get your tax credit and an RDSP. This makes many persons with disabilities reluctant to apply, which means that this benefit becomes under-subscribed, as visible disabilities are probably only about 10% of all disabilities that are possible.

In various groups I worked with, it is difficult to work with a lot of the individuals involved. When one of the groups I met with discussed the social assistance review, those with highly visible disabilities felt that only they should receive the higher amount of income support, because after all, they have "higher disability costs" than say, somebody who has a mental health issue. I dispute that, but this is an impression that many people have. I also met people who have various invisible disabilities, such as multiple chemical sensitivity, chronic fatigue syndrome, narcolepsy, migraine syndrome, post-stroke recovery, certain types of brain injury, and related disabilities, that may leave one not markedly restricted from any of the activities on the disability tax credit list, but they certainly do have major disability related costs. Persons with multiple chemical sensitivities often cannot do their own shopping or yard work because of the smells, the released fragrances of various products in the store, that even if they are not buying the products, they are nevertheless exposed. Chronic fatigue sufferers vary in their needs, but living alone, they may not be able to prepare their own meals, keep their homes clean, or even drive. If one lives where there is poor transit, they can spend hundreds even thousands of dollars on taxis or paying others to drive them, or do work for them. They cannot recover most of these costs, and therefore, many do not expend it if they cannot afford the upfront costs.

Living with an invisible disability has many effects on a person. Because the disability cannot be seen by others, unless the other person is either also disabled in a similar way, or a loved one is, they feel misunderstood and their problems and issues minimized by their community. In the past, when I employed staff for projects I was involved in, I tried to understand invisible disabilities, as well as the more obvious ones. This is something that is difficult to do, even for somebody like myself, as the person needs to disclose to me first. In one case, the person was frequently late for work, appeared sluggish sometimes during the day, and at times, rushed to complete projects at the last minute. He did good work, but these limits concerned me. Instead of applying disciplinary measures, which I had every right to, as the lateness was almost everyday, I asked him to tell me what he needs to help him do his job better. I told him I didn't want to see him rushing everything at the last minute; was there something I can do for him? He disclosed a number of issues, including narcolepsy, migraine syndrome, and other similar health issues. I asked him to tell me what makes him feel better. I learned that a half hour rest during the day, and flexible hours to meet deadlines would work. Once I applied that, his work was excellent and high quality.

Unfortunately, most other employers during that time frame in my life would only take the hard line about the lateness and the sluggish performance, and wonder if there were other problems, usually of a social nature and not disability-related. Over time, as I became more experienced in managing people, I accommodated persons who had care giving responsibilities, daycare needs, as well as those with other kinds of problems, such as English not being their first language. All of these people turned out to be excellent employees, and performed well when accommodated and understood. The accommodations were provided privately, and in a flexible manner, so that the person's privacy was respected, while at the same time, results were still expected. In one program I ran, there was a large outreach component to it, when it was funded. One of my staff was visually impaired, while I had others that were able to drive. Prior to the outreach role, the visually impaired person spoke to people on the phone, used the computer to type reports and simple correspondence, as well as counseled people in the office. She wanted to do outreach work. Given that Niagara has poor public transit, especially between communities, I had the two other staff persons do outreach outside of the head office's city, and I allowed the visually impaired person to conduct outreach within my city, using public transit to set up meetings, and organize sessions with stakeholders. She did well, and I was able to increase her work hours as well, which she wanted.

When a person with an invisible disability is not accommodated, it impacts on them psychologically. They begin to notice their disability more, and how it makes them different and less than, as opposed to just needing another work around. They can become very discouraged and become less motivated to try new things. Many will not even apply for jobs that appear to be not open to them. Employers need to learn about what is actually required in a job, not just what is nice or how a job is typically carried out. An outreach worker for my earlier project would typically drive to the various locations of the meetings we set up, and meet with people in their homes, or in public places, such as a Tim Horton's. In my mind, all I needed was an outreach worker that knew how to use public transit, and was fairly mobile in terms of using it, and can handle the "people aspects" of this job. For the person with narcolepsy and migraines, he would not have been able to carry out a full work day, if I had not found a quiet place he could lay down for about a half hour a day. Given that rest period, he was as productive as everybody else.

Most jobs can be restructured or accommodated if an employer knew how to think outside of the box. These accommodations did not cost my company very much, nor did others actually notice any impact on their own workloads as a result of my ability and willingness to accommodate the needs of these very capable people. If employers continue to not think outside the box, more and more people will be unable to work for them, or won't even bother applying for the job. I live in a region where almost every job, even office jobs, require candidates to have their own driver's license and vehicle. Why? If I was the employer, there would actually be very few jobs that would require these qualifications, even in a region like my own. If a person needed to travel sometimes outside of the office, I would instead put, "job involves some travel throughout the region for meetings and presentations". Whether the person conducted themselves to these meetings by personal vehicle, by bike, by bus or even by chauffeur, that is not my concern ... my concern is can they function at these meetings and carry out these presentations? The only jobs I would require a driver's license and personal vehicle are for jobs in which they are required to drive, such as bus drivers, taxi drivers, couriers, delivery people, limo drivers, etc.

The same would apply to many other "qualifications", such as ability to type. What if the person was unable to type, but were quadriplegic? There are computer programs that would allow that person to do exactly what I am doing now. My question would not be, "Can you type?", but "Can you use any kind of computer or other device to produce documents, reports or letters, etc.?" (if that was part of their job). If these things are so common sense to me, how come other people in charge of human resources and employment haven't caught up yet?

We have to move forward and away from "old school thinking". We have to see jobs in terms of what you need as a result or required outcome, not a process or typical means of completing the job. I hear all the time from people with disabilities, both visible and invisible, about how they wish they can work, or wish they can even volunteer for somebody, but employers and agencies don't even think beyond first base; that is, they don't consider that people need different ways of coming into their building, as well as accessing all the necessary amenities within it. Just as I would never dream of leasing an office in a multi-story building without an elevator and doors wide enough to admit even powerchairs, employers should be thinking the same way. If a visually impaired person applied for a job at my office, and they seemed to be the best candidate, I would certainly endeavour to learn how my computers can work with that person, such as what software, what website design styles, etc. would work the best for them. I would even think of how a phone can be designed for that person's use as well. These things are not that expensive, and if all employers, all facility managers, all service providers and others, considered the importance of these things, there would be less of a need for ODSP and more of a meaningful and rich life for millions of people with disabilities of all kinds.

And back onto the topic of the Disability Tax Credit, wouldn't it be wonderful if the tax credit actually related to YOUR true costs of your disability, and not just some imagined or conjured set of restrictions that appear to leave many people out, and as a result, substantially disadvantaged when other programs become tied to it?

Your thoughts?

THE WHOLE WORLD IS WATCHING ...

The 2010 Winter Olympics held in Vancouver is over with, after seventeen days of competition, commentary, excitement and knowing the whole world was watching ... I frankly never felt such unity with my fellow Canadians until we got into the Games ... and it is a powerful feeling indeed. As one of the commentators stated, "When we watch the athletes compete, it almost feels like we are there competing too ...", and when they win the Gold, we share their glory, and when they miss out, we share their disappointments.

With this Olympics, we had the advantage of Twitter, Face Book, MySpace and the Internet in general to keep up with up-to-the-minute coverage, and even replays of events you might have missed if you were away from the Games that day. With many of my friends, I shared day to day comments on Face Book about the Olympics, what I seen and what I felt, as did they ... and despite many of these people being half way around the world from me, I felt they were in the same room. The sense of unity gave me a sense of calm I never had in a long time, as I was able to focus on something else and boy, was it ever satisfying!

Canada came third in total medal standing, with 26 Medals in all: 14 Gold, 7 Silver and 5 Bronze. Canada had the most Gold Medals of all the countries competing, and apparently had broken the World Record for any Winter Olympics for the number of Gold Medals earned by any country. The Olympics gave me something to go home to, something to talk about, and something to look up periodically throughout the day. Today, I posted the Olympic theme song, "I Believe". This is Nikki Yanofsky, apparently a sixteen year old girl from Quebec. The particular link I gave in this treatise shows the Torch Rallies all over the country, all starting from the East Coast and traveling from hand to hand until it reached the Opening Ceremonies in Vancouver on February 12, 2010. The Torch rally came to my community the day after I moved my commercial office, and I have a couple of friends of mine who were torch bearers.

What I am particularly proud of, and almost sarcastic about, is the fact our hockey teams both won Gold. Today, it was a tense game with the Men's Hockey Finals between Canada and the U.S. Just as the end of the third period came to a close, the U.S. offense did a goal, tying the game at 2-2. In the Olympics, they will have one period of overtime, and the first one who scores gets the Gold. If there is no score still, there is a shoot-out. They had a brief intermission when I took off to the store to grab some supplies, and returned ... At the store, everybody was talking about the Game and were, like me, getting supplies and returning to watch. Just as I was about to step up my front porch, I heard loud cheers coming from several houses on my street, and as I came in, my son told me Sidney Crosby ended the game by getting the winning goal with the assistance of Scott Neidemeyer, both Canadian NHL stars. I can only guess what might have happened if Crosby (or anybody else on the Canadian Team) did NOT score ...

Instant Face Book groups, You Tube replays and other links to various sites, were set up so people can relive this story over and over again. In many ways, the Olympic Games brought some of us out of our collective depression. Two nights ago, the Women's Hockey Team made Gold as well against the U.S., and celebrated afterward ... both goals were made by an 18-year old woman from Quebec.

Even eight short years ago, when the Olympic Games were in Salt Lake City, Utah, I remember the Canadian Team doing fairly well then; however, not a whole lot of us were as hooked on Face Book, Twitter, and all these other instant replay sites that we are now. Literally, the whole world was watching! I saw Prime Minister Stephen Harper in the gallery watching the Olympics ... even many Canadian celebrities, such as William Shatner (who plays "Denny Crane" on Boston Legal), Michael J. Fox (the young Republican from "Family Ties", and later starring in such movies as "Back to the Future"), as well as a couple of actors from Rick Mercer's crazy show. This was followed of course by the stereotypical stuff Canadians are made of, such as beavers, canoes, RCMP, moose, etc. They missed the Eskimos and igloos, but perhaps, they did not want to anger the Inuit population of our far North. It was all in jest, and brought so many people together.

The closing ceremonies also brought a sense of sadness in me too, as people are now going back to their home communities, hopefully for more celebration and adoration, and federal Parliament will be opening up after its long self-imposed sleep induced by Prime Minister Harper. Normal life will begin again. It is the same way I felt when we all stopped talking about the September 11th attack on the World Trade Centre in New York, and on the Pentagon. Sure, conspiracy theories about this incident do abound, but this post is not about that ... it is about how the whole world literally came together and lent their support to the families of those whose lives were lost in this atrocity. I first learned the seriousness of all of this over the Internet, as well when my husband called me downstairs to watch a replay of the two planes going through the two World Trade Tower buildings.

This is particularly difficult for me, as I live in a Region where there is not a lot of "togetherness" on anything. People are bitter, travel their own ways, oppose and chastise others who are different, and exclude people regularly from even the most basic activities each take for granted. Take sports, for example. As a young person, I enjoyed sports immensely. I loved to skate, roller blade, ride my bike, as well as swim and dive. I was on a baseball team, even as far as my first few jobs in the real world. I recalled happily an incident when I was in a grade seven, when I was on a girl's ball hockey team and I served as goalie. I remember one time, I blocked the ball from getting in, and not only that, I plowed it to the other side and managed to get it into the other team's net. These things give me fond memories, and I remember the stunned look on my team mates' faces when this happened ... I think there is a lot that society and communities miss when they stop being in things together. Sports cost so much now, that I could not afford to enroll my children in it anyways, and schools don't promote these activities as much either unless you have the money to pay to get into them.

Being a part of something is so human, it is almost occupying a step on Maslow's Hierarchy in itself. I feel I lack the sense of belonging at times, despite the fact I belong to a particularly strong profession, a couple of activist coalitions, as well as many online activity groups. Belonging has taken on a brand new meaning with the advent of technology. I have friends that love to use gadgets, and go around with their mobiles, take pictures and tell the world what they are doing ... I find that fascinating, even though the person doing this may be feeling as lonely and excluded as I am. Technology has put a distance between people that we never had before, nor can we actually fix this.

I resolved some of my feelings of isolation by moving into a new office in a secure building that has other members of my profession in it, as well as other professional offices of a different type. There is a popular cafe downstairs, where I can literally sit and listen, and enjoy the buzz of activity around me. This sometimes helps me too. I also go in twice a day, or more if it is particularly busy, to assist with a couple of online groups that deal with some of the issues that I work with both professionally and as a volunteer.

To me, the part about watching the Olympics I enjoyed the most is when individual athletes were interviewed and asked about why they joined the Olympics. For many, this was always a goal of theirs. They persevered, had families and communities rally for them, and they just kept improving their personal best.

In many ways, I am like this too, except in my own professional endeavours. I am not happy with anonymity and living a dull life, where people don't know or care who I am. I've never had an "ordinary life" either, but I am not here today to speak of how un-ordinary my life was, or how the great potential I've personally witnessed in others and who I personally know and interact with, has made me who I am ... I just want to say that if you have followed a lot of the other posts that I have put in here, particularly about social issues, it is all about one thing -- the right to fulfill one's total human potential.

I worry about a lot of these things. Is Stephen Harper going to go back to Parliament, after his high from the Olympic Games and proceed to cut funding to Canadian athletes? Is he going to set it up so that the Games only become further corporately controlled than they already are? I hope not. I just hope Mr. Harper and his Cabinet colleagues think about what they saw, understand what people like myself saw in these Olympics, and then try to apply them to his governance of all Canadians. As individuals, as well as collectively, we can be pretty powerful and strong people, but we need the support or the foundation in order to achieve.

I hope to meet Stephen Harper, only one of two Prime Ministers I have not met yet, and to speak with him about this - and how I apply the right to empowerment to persons with disabilities as well. The fact that Harper and his Cabinet made many cuts to programs for persons with disabilities has led to a reversal in many of our access to opportunities, as well as access to our rights to challenge systems and issues under the Charter of Rights and Freedoms. I live in a region where very few people understand the Human Rights Code, and the fact this quasi-constitutional legislation is set up to protect people who think, move, speak or work differently than others, and to help ensure they have equal opportunities to fulfill their human potential.

Unfortunately, even many people in my own community do not understand the politics of disability management. I do not fault them for it, as the mass media and other interests make it difficult for people to understand these things, the same way that food banks make it difficult for the public to understand the politics underlying the causes of poverty. Just keep giving to the food banks and everything will be alright, they say, or at least that message is given. To me, I look at things from a strictly rights-based approach, and with rights, comes dignity and how people are dealt with when trying to learn about or enforce their own rights.

Oh, how I desperately want to believe there are people like me in this region, instead of peppered all over Canada and half way around the world, as it can get pretty awful when I am not at the computer and then dealing with real life issues that I know exist, and that I know are coming from way too many elephants in the room that nobody in this region, and sometimes, even the province, does not want to acknowledge or listen to. This is a lonely fight, but in many ways, I truly want to believe. Your thoughts?