Art for Art’s Sake?

Here is my latest story.

I met Irena about a year and a half ago. She is a member of the choir that is part of the play called The Book of Judith. Now if there was ever another story, it’s about The Book of Judith which is a whole story in and of itself. There is a blog about this play which you can find at bookofjudithplay.blogspot.com.

We were in rehearsals for a tour that begins in St. Catharines in October. At this time Irena handed me a book of her poetry. My first quick glance revealed a melancholy tone. I will type in a short poem at the end of this posting.

I recognized of course that I ought to interview Irena for this series of stories and she jumped at the chance. I quickly realized that she and I will need to drink a few cups of coffee (or tea or beer) over the next while in order for me to capture the whole story, if that is even possible, but here is the beginning. My point is that like many people Irena has never really had the chance to talk about how being labelled disabled and being an ODSP recipient influences her personal path, and the opportunity was more than welcome to her.

Irena came to this country with her family from the former Soviet country of Morava. At the time she was a high school student. She was already writing poetry and stories but did not feel that it was her place to hope for a career of her own design. Instead she followed the path that her parents, in particular her mother, laid out for her.

At the age of 18 it was recommended to her that she become a recipient of ODSP. She obediently signed the paperwork. In her heart she questioned whether she really wanted to label herself as disabled but it was many years in the future until she would begin to formulate these questions in her mind.

A dozen years later, Irena wants to establish her career as a writer and she has self published a book of poems. She frequently produces other writing, but she has never seriously researched how writing might become a career. She confessed to me that being on ODSP has made her somewhat lazy. It’s true that it pays the rent and it provides sufficiently for her and her boyfriend to have been able to establish an independent household. However, it also prevents her from seriously looking for employment for exactly the same reasons a previous “Joan” pointed out. Dealing with the impact of a big cheque in one month will take several months of work with one’s Client Representative to reaffirm or re-establish one’s eligibility for the benefit. It becomes easier – at least in the moment – to earn a little bit here and there but never to truly step out into the employment world.

Irena questioned in a very quiet and indirect way whether the purpose of ODSP is truly just to firmly establish that one is disabled. It is a question that is difficult to articulate and easier to ignore. But truly is this young woman disabled? It is a fact that she walks with crutches and moves and talks slowly. It is apparent that she easily defers to more assertive people. But it is also true that she thinks and writes beautifully. If one is an artist, is recognized as an artist, and is capable of establishing an artistic career, where is the disability?

But then again, when has our culture ever recognized the making of art as a genuine economic contribution to our society? Clearly, it creates a more stable life for Irena to rely on a regular ODSP cheque as opposed to struggling for meagre grants and skimpy opportunities to sell her work as is required of artists who do not have the advantage of being born with Cerebral Palsy.

Here is an example of Irena’s writing:

The World Is…

The world is dark…
So dark it hurts
No such thing as true happiness,
We are primal;
Running like hamsters on a wheel of greed
Going nowhere…

We shock ourselves back into life,
Accept conformity,
Condone uniformity,
Alone.

Mind Boggled Again

Well, this is another story related to the Daily Bread Food Bank. I don’t mean to pick on them. This particular food bank is the source of an important resource to me at this time. We are related. But, it’s a very one sided relationship, it seems. I have not yet figured out a way that I can enter into a genuine dialogue with this complex and mysterious organization.

The context for me is that I have been bed ridden for a full month – October to November 3. Because some will be curious let me just say that I have succumbed to a complex set of reactions to medication, etc due to the fact I have been in quite a lot of pain for over a year.

One of the factors which is quite relevant to this story is that stress leads to pain leads to stress. For just over a year I have been learning, as readers of this blog know, to live on the ODSP benefit in a neighbourhood which initially was not of my choosing. This situation has been stressful and so is a factor in my current physical condition.

So, today, feeling a little bit stronger I went off to the food bank. I haven’t been there for over a month and my assistant and I were clearly missed by some of the regulars. That is kind of comforting in itself! I have often found over the years that I usually enjoy hanging out with poor and marginalized people partly cause their quirkiness eases any discomfort I might have about my own and partly because these people are very reliable sources of good information about where the real barriers are and what some of the tricks are.

This particular food bank has undergone a major reorganization in my absence. According to the signs it is intended to be a temporary change of operations. Pardon me, but I have my doubts!

The immediate obvious effect of this reorganization is that all the waiting patrons were crammed into a very tiny area and it would seem that there was only one person available to process the waiting people so that they would get their ticket and be able to move onto the food selection area. The food selection area has become nothing more than a line-up to hand out bags of food as there was no room available to lay out the selections as in the previous manner.

I never actually got to the point where somebody could hand me a couple of bags of food. I actually went to the food bank twice today and left empty handed both times. The first time I went I waited approximately 40 minutes and not even 1 person made it through from the waiting area to the food distribution area. The second time, the waiting line was even longer and I didn’t bother to try to get through.

Now I’m sure you realize that I have the luxury of deciding to not use the food bank this week. I have many friends and a full freezer because last week was my birthday and I was sick and lots and lots of people brought food. Today’s trip was more in an effort to broaden the selection of food available to me as much of what’s in the freezer is sweet stuff – not really suitable to my diabetic diet. Be that as it may I have the privilege of waiting till Friday to find out if the food bank has figured out how to process people more effectively.

My real message here is: “What is the point of processing people, at least under these difficult circumstances”. Everybody’s going to get exactly the same food selection in exactly the same two bags. The food that’s going to be there this week is there already. Out of the hundreds of people who will use this support this week surly not more than one or two would be nuts enough to line up more than once to get double their allotment for this week. What possible purpose can it serve to force dozens of people to wait for hours?

I hope you realize just what sort of people are waiting, and that you can get a sense of just how much stress can build up in this kind of situation. The gentleman who welcomed me to the line-up in the first place has all the physical signs of living with psychosis which is controlled by medication which gives him speech and body tics. Another person down the line is a mother with a 3 year old waiting without even a single toy to play with, surrounded by mainly single men. This is not an ideal situation by anybody’s stretch of the imagination for a young child. Others are among the classically unemployable, who wile away their time either sullenly sitting in silence or talking to each other about how such and such a training program never really led them to employable status, etc, etc.

A naïve observer would perhaps conclude that the main activity of poor people in our society is to wait. My heart aches for the 3 year old who is already becoming well acquainted with this job description.

I’m not actually the huge rabble rouser that I would like to be in this kind of situation. Today it was easy to see that all that was required was for someone to break through the line and start handing out bags to each person. Bag by bag, person by person, the waiting line would have been dispersed in less than 20 minutes with no harm done to anyone, especially the Ontario government. But I didn’t do it and neither did anyone else. We are after all good citizens of Ontario.

Just Something that Ticks Me Right Off!

Okay, so this isn’t a story about ODSP. I have been sick for about a month and it has not been a time when I have been interviewing people about their contributions. Just the same this story is in the same vein and it’s about how contribution is so frequently thwarted by all the tangential screw ups of the service system and the people who are trying to do “good”.

This particular “John” lives in a supported living service near the St. Lawrence Market area of Toronto. I met him approximately a year and a half ago when he first came to a visual arts program designed for people who have very limited use of their bodies and especially people who do not speak. John fits both of these criteria.

Even though John struggles to be understood, using a combination of pointing, grunting, smiling, head nodding, a voice producing machine, and a word book, it is clear that he has a remarkable amount of courage in regards to being out in the public and getting around. On more than one occasion he has arrived by subway and bus even though he was uncertain of the route and the overall trip would take him nearly two hours. He seems to be relatively comfortable getting people’s attention and simply letting them figure out what the problem is and solve it with him. In this way he gets himself from A to B.

Nevertheless John frequently does use Wheeltrans. After all this parallel transport is designed to be able to be booked on a regular basis to go to the same place at the same time each week, giving the user an accessible and reliable means of transportation to his or her choice of participation.

Or so you would think.

Laser Eagles, the art program, used to take place in an Etobicoke Community Health Centre. At the end of the summer we moved to a nearby drop in facility as the community room of the CHC was frequently booked during our time slot.

Now understand this. We are artists. Yet because of our inability to access other facilities usually used by artists – both physical and financial inaccessibility – for six years we have relied on weekly three hour slots booked in health service related rooms to do our painting. Thus our “disability” yet again outweighs our other characteristics. Imagine being an artist and having only three hours a week when you could do your work?

Be that as it may, John, and other artists who use Wheeltrans, have frequently had to wait another two hours for their return bus. The pick up time is 3pm but for the internally motivated, unobvious reasons known only to dispatchers (if even them) John’s bus is never reliable for his return trip. In case you think this is peculiar to John, there have been at least three artists in the last six years who have quit the program because they could not tolerate the unpredictable waits. Just so you really get the picture, some of these artists would be returning to their support service residences during rush hour, which would extend their trip by another hour, which would mean they would arrive home three hours later than expected, which would mean that they would not get their dinner meal. On more than one occasion a Laser Eagle volunteer has gone to feed somebody a meal.

When we moved to the drop in centre John’s bus suddenly became very unreliable again. This is a common tendency of Wheeltrans when you change your drop off and/or pick up address. The trouble is there is nobody around at the drop in centre on a regular basis from 3-5pm. So suddenly John was no longer welcome because the drop in centre cannot take responsibility for waiting with him, neither can they legally leave him alone, although he would be happy to wait by himself.

Now this is something that Laser Eagles can figure out. We’ve done it before. But this is not how the service system approaches a real problem. Rather than finding someone to wait with John it was announced that he should not come to the drop in centre. Fortunately John doesn’t get messages he doesn’t like and he showed up anyway today, and his return bus arrived on time – thank God.

I hope you get my point. When it comes to being labelled disabled there are innumerable barriers to contribution. John has thrived as an artist. Over a very short period of time he has gone from having his “tracker”, (a volunteer who supports the artist to produce his work), do all the brush handling to holding his canvas in his lap and using his brushes in his own hands. He has gone from using only paint-by-number canvases to designing his own scenarios. His current tracker is a young man who is deeply moved by the opportunity to support him to paint and figure out his transportation issues.

I get angry – hot under the collar – when such obvious effort and inspiration is thwarted and undervalued. In the mid seventies the province spent 21 million dollars to create Wheeltrans. It’s been spending millions ever since to keep up a poor and ineffective parallel service. Why can’t John and others like him have a public system that actually works? Is he not a member of the public? John would take the subway if any of the subway stations near the Laser Eagles location were accessible. Why not?

Working Ain’t All It’s Cracked Up To Be

First, let me apologize for not blogging for a few weeks. Various excuses apply, but in the name of participatory story telling, I encourage you – the reader – to make up an excuse for my lack that inspires you!

Speaking of readers – it would appear that almost NO ONE is reading this blog as only one person ssshas become a “follower” or made comments on the posts. Well NO ONE!! – I know you are there. A couple of you have sent e-mails or made comments to me in person. It would be helpful if you followed the blog links and signed up as a follower, please. If this blog is seen to have a readership I can link it to some politically effective blog sites, and join in on grassroots efforts to change policy around relief of poverty. Yes, you, the reader, can join with me, the writer, to make a difference!

This story is about another Joan – someone whom I have known for many years and of whom I assumed she was on ODSP. I mean I know she lives in one of those apartments where an agency supplies a personal assistant four or five times a day, she uses a high tech wheelchair somewhat like mine, and that she volunteers regularly in the governance of her apartment building in downtown Toronto.

This week I found out I was wrong. This Joan has lived on a long term disability pension, an insurance related health benefit, for more than a dozen years. As a recipient of these funds she is not eligible for ODSP.

This week she told me her story which I will relate here briefly. Joan is skilled in computer networking and troubleshooting. She learned these skills mainly hands on, but as she was using them years ago to assist friends and to make a little money on the side she eventually was recommended to a large service and advocacy organization and she landed a good job in corporate Ontario.

Now Joan did a fine job and was used and even overused by employees across the company to keep the information system going. However her experience as a worker was mainly unpleasant. She found that her so-called “disability” and not her work performance was constantly the focus of attention. For example, other employees would excuse their absences from their desks by saying that she needed their help when this was blatantly not the case.

Joan found it difficult to get treated as a typical employee. For example supervisors would refuse to give her proper performance evaluations, and over time she found she was passed over for regular bonuses and promotions. One time after renovations she found herself regulated to a cramped cubicle instead of an office. This gave her lack of privacy in the use of her speaker phone and lack of mobility with her wheelchair to interact with others in the workplace. She could no longer perform essential duties adequately. She became depressed and eventually left work on a long term disability income.

Joan’s story might sound exaggerated, but not to me because I have experienced the same sort of corporate cold shoulder myself and have seen two other people get very ill under similar circumstances. Another bunch of stories indeed!

It might seem that having a long term disability pension from a health insurance company is not such a bad deal, but just look at the downsides:
- Joan cannot earn even one penny or she will lose her meagre $1800/month;
- Long term disability DOES NOT cover medications, and dental and equipment costs. Joan had to pay $10,000 from her own savings for her most recent wheelchair;
- Joan is not eligible for a retirement pension so when the long term disability income ends at age 65 she must depend only on CPP and Old Age Security; and,
- Joan must be assessed every two years as still “emotionally disabled” and if she is deemed to have recovered she will lose the income anyway.

The monetary value of her benefit is about $800 more per month than what ODSP would provide, but Joan often wonders if it is really worth it. Her self worth and her bank account are stressed ongoingly by this “benefit” and she often wonders if she is making the right decision to not give it up.

In the meantime Joan volunteers in many different ways and avoids getting paid work even as she locates sources of grant money to fund others to do the work she is already participating in.

Doesn’t it just make you want to smack your head against a wall?

Judith

Rewarding Generousity

My next “Fred” is a man that I met on the first day that I moved into this co-op. I’m guessing he is in his late thirties or early forties although I have never asked. At the time he was residing in the apartment across the hall, but now he has returned to living with his mother. His wife lives in my building. Their separation is not due to any lack of affection, but in order to facilitate her support. Yes, that is another story!

It was a bit difficult nailing Fred down to an interview because he is SO busy. When our first appointment was scheduled he postponed due to helping out his brother in some way. Our next missed opportunity found him painting the apartment across the hall – the very one that he moved out of a few months ago. He had been subcontracted by the maintenance department of the co-op to get it ready for a new resident, who is also supported by the same local service agency that serves Fred’s wife. And, yes, you may have gathered that there are many other stories wrapped up in questions about why residents who are supported by service agencies find themselves moving around so much!!!

By the way, Fred was doing this job for cash at about half the rate that a regular painter would charge for a similar job.

Anyway, back to Fred. He told me that he first became an ODSP recipient approximately fifteen years ago when he was working for an auto body shop and experienced “problems” that got him referred to psychiatrists. He is no longer on psychiatrist prescribed drugs but he is still considered to be disabled.

Fred works twelve hours a week for another service agency. He works as a janitor and is paid one dollar an hour. Outside of these twelve hours, he frequently does similar work for the same agency for a similar price. Altogether he works an average of twenty-five hours a week.

I met Fred because he spontaneously offered his assistance when I was moving in. Now, even though he no longer lives in the building, he is a frequent visitor and is seen doing such tasks as gardening, helping people move, and doing odd jobs. He also provides essential support to his wife who has a complex seizure condition. On her not so good days she uses a wheelchair and Fred assists her to go shopping and to accomplish many other necessary chores.

Fred says that ODSP pays his food, his rent and gives him a drug and dental card. He is allowed to “officially” earn $160 a month above his benefit. He stated that this is the reason for why his pay rate is so low.

In summary, Fred, in any given week works as a volunteer and contributes to others in a wide range of ways that include helping people move, being a companion, providing personal assistance, doing maintenance, painting, gardening, counselling and providing information.

Fred would like to get off ODSP although his family and friends advise him that this is too risky. Apparently, his case worker agrees that he should try for regular employment and regular wages. However, no one has ever assisted Fred to write his resume and to get into the job finding world. He continues to wait for this support.

My new friend is a good example of co-operation. I am genuinely sorry that he moved out of the co-op. Not only is he fun to work with but it was a lot easier to keep the social committee going when he was available to put up posters and do odd tasks.

I have offered Fred my assistance in writing his resume!!
Judith

Where Does the Madness End!?!

This past month I organized two interviews and then waited. As I have said in a previous posting there are so many ways that silence works for people. So I waited nearly two weeks for one interviewee to make a two word edit in her story. I waited nearly as long for the other one to drop by my apartment for ten minutes. He is in my building six days out of seven.

While I was waiting I happened to be on the phone one morning with a woman in her mid-thirties (another Joan – all the women interviewees are going to be Joan!) I have known her well since she was ten. We visit about once a year and talk two or three times a month on the phone.

Joan lives in Montreal, in a group home where she shares a room with another resident who is not in any way a spousal or sexual partner. She prefers this arrangement over others in her recent past because the “house mother” is much more relaxed and the rent is cheaper.

Joan has lived on welfare – the Quebec version of ODSP – for fifteen years. She lives this way because she is on a complex of psychiatrist prescribed medications – at last count 14. She became diabetic about ten years ago so a few more meds have been added to the cocktail. Beyond the $900 she receives for food and rent welfare pays for these prescriptions and for some “training programs” and the transportation to these programs.

I put “training programs” in quotes because Joan has been training on and off for exactly the same sort of job for nearly as long as she has been on welfare. When she is mentally well she works as an assistant in a seniors’ residence. She performed this job more than adequately in one establishment for over five years.

Her tasks are simple, repetitive and absolutely essential – if she didn’t do them a regularly paid employee would be called in. Once or twice a day she sets up the furniture in an activity room, wheels the residents into the room, sits with them while they do exercises in their chairs or play board games, helps serve a light snack, wheels the participants back to their rooms and cleans the room. Joan does this 3 days a week usually for about 2.5 hours a day, and sometimes she will take a 5 hour shift.

Joan performs these simple tasks with a genuine affection for the old people she supports. Her high regard for the elders has won her several acknowledgements at various memorial services from grateful relatives after a resident has died.

Joan provides other social support as well. In her words: “I am there for my friends. I help them out when they don’t feel good. I had to call 911 twice for my friend last month who had taken four days of pills and slit her wrists.”

Similarly to the way things work in Ontario, Joan says that being on the “disability” benefit creates some obstacles for her. She says: “It makes it harder because even if I wanted to work for the people I could lose my welfare.” In such a case she would lose her medical and dental coverage, and have to pay the prohibitive cost of her medication.

Joan has had some private arrangements in the past, providing one-on-one support to an elderly woman for cash. She says: “I want to work for the elderly under the table so I could have more money to buy things like shoes and more tattoos. I would work more than 7 hours a week if allowed, but I’m scared of losing my welfare.”

When Joan is undergoing an episode of hearing voices, anxiety or other disturbance life gets very rough and it is clear why she needs ready access to a stepped-up level of medical and social support. It is perfectly understandable why Joan equates working for money with taking an unnecessary and dangerous risk. In my view I wonder what it would take to create a government funded financial support system that permitted Joan to access medical and other health funding, and even life cost money from time to time, while also participating in the regular economy when she is well.

Ah, but maybe that’s another story.
Judith

Catch 22

Yeah! This week I got to interview a young woman who has been on ODSP for three and a half years.

I met Joan in the context of work done to improve diversity and inclusion in public education in Ontario. (Now that’s REALLY another story!) Joan is attractive, poised, articulate and thoughtful. Her main reason for being a recipient of ODSP is that she uses a motorized wheelchair and needs help with the cost of buying and repairing this and other accessibility equipment. These expenses can add up to tens of thousands of dollars a year – a prohibitive cost to any but the well paid in our society.

Joan has sought employment on a number of occasions and finds two sorts of limitations to this way of living. Her own physical characteristics make working in winter highly fatiguing. On top of this, access and transportation barriers are worsened by cold and snow.

However in summer months Joan has participated in a number of leadership and training programs, some of which were paid. Unfortunately, she says, none of them gave her access to the world outside of the “disability” field. She would like to, and has tried to, break into a world of contribution, even employment, beyond the “disability” realm but has been unable to find this opening. She has applied but never heard back from the places she applied to.

Joan volunteers 15-20 hours a week. She makes presentations about inclusive education, reviews and makes decisions about applications for specialized programs such as summer camp for children with disability labels, is a program advisor for a children’s rehabilitation organization and is a member of a committee that helps decide who will receive certain awards.

Joan told me that being an ODSP recipient makes volunteering possible in that it pays for her equipment and its repairs, plus her medications. Being on ODSP also makes volunteering, and the likelihood of finding paid work, harder in that she must continuously negotiate not receiving too much money for what she does. In fact she has turned down some opportunities because the level of negotiation that would have been required seemed too exhausting! Herein lies her Catch 22.

Joan also admitted that she sometimes lies and does not report every small stipend she receives. To quote Joan: “If I am honest about being reimbursed for my volunteering, it would get deducted from my ODSP and what is the point of that? Other opportunities open up, but I might turn them down because it would make things complicated. I would have to negotiate with them carefully and I am limited by the consequences ODSP implements around my making money.”

Joan went on to say that she has chosen not to try for some awards and honouraria because even if she received an amount like $5000 just once the explanations and reporting she would have to do are so onerous as to make it potentially too risky and so not worth the effort.

The problem in this arrangement as I see it is that Joan is also giving up two ways that would help her get to her goal of working outside of the “disability” field. On the one hand she is limiting her resume as she both avoids reporting some activities and avoids other opportunities outright due to receiving ODSP. On the other hand, as is well known in the employment sector, volunteering is a strong path to paid work, unless of course you are constantly limiting the scope of areas where you put yourself forward.

So here is Joan, ready, willing and able to work, at least in the summer – well educated, well trained, well known, already performing at employment type activities 50% of the week, skilled and experienced in many ordinary tasks of the NGO sector – and unemployed, poor and expecting to continue in this condition. And what is the persistent barrier? If she went to work for real she could not afford the cost of sustaining her wheelchair, her medications and transportation that was safe, warm and effective in the winter – (a wheelchair accessible taxi??).

I truly wish this was a unique story because then some sensible people would work it out with Joan and it would all be OK. Unfortunately Joan’s story is far from hers alone.
Judith

Silence

Today is muggy and hot, with a smog alert announced this morning, which means elderly and other vulnerable people are encouraged to stay in air conditioned surroundings and drink lots of water.

The food bank being where it is – in a bus free industrial area - as I entered and left today I saw two elders walking along, braving the heat and thick air to get their food allowance.

Unbelievably there WAS bread today – long, squishy white loaves that had been sliced lengthwise instead of the typical cross cuts. No matter – it brought a chuckle! As I write my personal assistant is packing sandwiches into the freezer. Remember I have plenty of peanut butter!

Silence is an intrical part of being poor. In many ways it forms a large part of the texture of the day.

For example, today being intensely hot, the food bank was no place of idle banter. The ubiquitous noise of fans and limping air conditioners, and fork lift trucks in the back met no challenge from conversation, excepting only in the tiny computer room where you are issued the dry erase card that permits you to enter the waiting anteroom before the actual food room. When my assistant and I reached the distribution volunteer he performed his duties without uttering a word except to agree that I could have two cans of tuna instead of one can and a pack of hot dogs.

Surprisingly he was both adept and generous. He made all my selections for me (tuna excepted) with clear experience regarding what I could and could not have. He was clearly not confused at all by the complexity of the selection criteria he was required to follow. Yet as we approached the end, where only candy and old vegetables remained, he too began to pop in to my bag an extra carrot and a small sack of chocolates. I was moved again by how my colleagues of meagre circumstances find ways to be generous and to express their compassion for each other’s situations!

My assistant went to the kitchen as soon as we got home and now my freezer is well stocked with curried vegetable soup.

The relative silence of ODSP case workers is also notable. As I mentioned in a recent posting it seems that these people go to extensive effort to deal with the random rulings spit out by the electronic inners of the system that distributes the money. On the occasions I have attended interrogations the behind-the-desk staff have worked their way around to giving me favourable answers, but never have they disclosed their opinions, chatted about their working conditions, answered a direct question or explained why they invariably leave me waiting in small rooms while they do some mysterious thing out of sight and earshot. “I will be right back” is the best you will get.

I believe that the expectation of silence is behind my friends’ initial reluctance to be interviewed for this blog. That I am writing a blog is in itself grounds for keeping quiet and avoiding my questions! I am not surprised – I am pointing out that silence is built into poor people’s way of life.

I believe it stems back to the situation I outlined in my first posting. Everything about ODSP and about other systems designed to “benefit” the poor is based on the Victorian poor laws. The harmonic that we still live with is the legislated certainty that it is a crime to be poor.

Criminals naturally don’t want to tell everything about how they live. Since it is clear that few if any human beings can live on the income that ODSP provides, nearly everyone in this circumstance must be hiding something somewhere – or they would be dead. But moneybags is, or at least so it seems, continuously aiming to close down these strategies. Keeping silent is clearly a smart thing to do.

But silence prevents people from acknowledging and celebrating many of the contributions that they make. Whether it be the volunteer who hands out extra cans of beans and extra carrots or the person who makes sure that another person gets back to their own apartment when Wheeltrans gets them only to the front door (and receives a little extra cash for the service), people cannot say who they are or what they are up to for fear of upsetting their fragile accommodations. But then we cannot say how much the world is benefitting from our activities either.

It is my intention to let the world know how deep the contributions go and how extensive their variety is. I must do so carefully. I am risking much by doing this.

Judith

Contributions That Make Things Work

I am in hot pursuit of four new interviews. In the meantime, I have been to the food bank again. This caused many reflections on other contributions I have been experiencing from poor people. I thought I would share this with you.

Once again there was no bread at the food bank, and in fact there wasn’t any in the back either so my “helper” and I were unable to take liberties. However, the absence of bread proved to be a conversation opener as I was waiting in the “holding tank” to go in and make my selections.

The person I am thinking of is a young woman, possibly in her mid-thirties, of slight build and gracefully dressed. She was accompanied by her son and daughter, both apparently between the ages of eight and twelve. They arrived just after we did.

The cause of our waiting proved to be that there was only one volunteer actually distributing food, another volunteer whose job it is to check us off in the computer system was absent from his office, and we were immediately preceded by a very chatty man who wanted to demonstrate his swollen feet to the computer volunteer when he finally did arrive. And so, the line was moving lethargically this particular afternoon.

As I believe I have written about before, an issue with being poor and being served is the constant message in the ambience that you are needy and helpless. My response to this ambience is to intentionally and ongoingly create strategies to shift the emotional atmosphere for myself and others. And so, I engaged the young woman briefly in joking conversation about the process of choosing, (and I use that word in ironic jest) from the meagre selection that would become available to us when we were ultimately allowed into the food room.

I started by asking her to bet whether or not there would be bread, but she wasn’t taking me up on that one. Her immediately response was “No bread!” and we laughed. As I peered through the window at the person with the big feet chatting up the volunteer, I noted out loud that there was a plentiful supply of peanut butter. We had a quick and affirming chat about how many cans of cranberry sauce and how many jars of peanut butter we had already collected from previous visits.

At this point I learned a strategy! The woman told me that she had frequently made peanut butter cookies for her kids. Now, as I’m sure you recognize, there is no flour or butter at the food bank. I realize that she had adopted a similar strategy to one that I frequently use; that she takes what is available and uses her small resources to buy something so that together she can make a food that is acceptable and nutritious. I’m not saying that I’m a genius for inventing this strategy – it is pretty obvious in fact. But I felt affirmed as she expressed a bit of her own story.

By this point, her kids were sitting quietly and we were chatting happily. It soon came time for me to enter the food room.


Once again the distributing volunteer was very generous, openly acknowledging that she was giving me more than she was supposed to, i.e. an extra can of salmon. There was fresh fruit this time. Perhaps the greatest moment was the point where the volunteer virtually thrust a packet of chocolate candy into my assistant’s hands. Although I cannot eat these things, I recognize her gesture as one of bringing a sense of abundance and gratitude into the space. I happily took the candies knowing that my personal assistants will make short work of them.

This reflection is about how poor people contribute to each other. The food bank is ninety percent run by volunteers, and ninety percent of those volunteers are also recipients. (These statistics are visual, not accurate.) Like the majority of the service system, the food bank could not run if it weren’t operated by the people who are served by it. Without access to the decision making, the intake or output processes, or any of the planning, it is poor people who are stepping in to the situation, working their way around the glitches, and making it work for each other.

Here are some of the contributions poor people make to the free food distribution system:
- Sorting the food, including disposing of rotten fruits and vegetables that arrive daily. As my assistant and I entered through the receiving area, we noted one young woman busily packing rotten potatoes into a disposal container.
- Distributing information, both globally and personally. A couple of small rooms are devoted to both legal and social questions and someone is always there to hand out pamphlets. Aside from that, individual questions are bantered around in the waiting rooms and in the line ups and around the coffee urn.
- Managing the emotional temperature. The line ups, the waiting, the sense of being personally inadequate, the struggles to meet the quirky schedules, the endless interrogation about whether you are poor enough to deserve this benefit, and oh yes did I mention the WAITING? – all this and more is trying on the temper. From friendly banter to authoritative restatement of the rules to sharing a cigarette to offering somebody a task, people take care of each other’s mood, ensuring that tears and outbursts are rare and easily deflected.
- Finding tasks. It doesn’t take very much observation to realize that several people who are volunteers are not actually doing anything productive. This can be annoying when one is waiting at the food room and there is only one volunteer there who is authorized to distribute food. But aside from this annoyance, the fact that many people are actually doing nothing is a time honoured way of keeping as many people involved as possible in a work related situation. I’m not kidding – I’m sure we have all observed as one person is digging a hole and two people are watching at a road construction site. There are many similar situations at the food bank – one person managing the sign up book and one person watching (and sometimes two), one managing the forklift schedule and three drinking coffee, etc.

It was a major disruption in my life that brought me to living in south Etobicoke, in poverty, in the first place. I am benefitting greatly from this particular contribution of poor people showing me the ropes, managing my mood and including me in activities.

My next story will be about silence and learning to break it tactfully.

Judith

My First Interview

It has turned out to be more difficult than I imagined to find people who are on ODSP to interview about how they contribute to society. As I mentioned in my last posting, people who deal with Moneybags and other parts of the service system have a variety of reasons to keep their experience and strategies to themselves.

At my first attempt to set up an interview I asked a neighbour who has been very active on one of the committees here at the co-op. She seemed hesitant and as I was calling on the phone I decided to change tactics. We agreed that I would come and visit her the next day. We live only a few floors away from each other.

Shortly thereafter I received a call from one of her case workers who told me that if I had questions I should ask them of her, the service provider.

Now I may not have responded very effectively but frankly I was taken aback. I have known my neighbour now for the eight months that I have lived in this co-op and from the very beginning, she and her husband have provided me with social support and have also participated actively in committee work. So my response to the case worker was to firmly state that my interview with my neighbour had nothing to do with service provisions and that I would ask my questions directly of my neighbour. Then I abruptly hung up.

The next day I received an e-mail from my neighbour who withdrew from the co-op committee and asked me not to call or visit.

I have not yet figured out what to do to restore my relationship with my friend. I imagine that at some point we will get it together again. I have mostly been “kicking” myself because I am neither naïve nor inexperienced with the service system. I could have predicted that they are closely supervising my neighbour’s relationships in the name of protecting her from something. Rather than allowing me to explain myself, either to her directly or with a supervisor present, they likely have simply convinced her that the stress is too much for her even though neither she nor they have any idea what I would be asking of her.

My second attempt to find someone to interview found me asking a person who it turns out is not on ODSP. That is, of course, no big surprise as there are many ways poor people get “benefits” in our society. One isn’t stamped with ODSP on one’s forehead. I guessed that this person’s circumstances involved an emotional characteristic that made it difficult to hold down a job. I was wrong!

With experience no doubt I will figure out ways to more comfortably ask people if they would be willing to disclose where their benefits come from and if they would participate in this blog.

The third person that I asked is Fred, who I met at my first ODSP Support Group. Fred interpreted my request as a desire to know how he volunteers. Now volunteering IS one of the ways people contribute to society, but that’s not really what I am looking for. Fred’s take on the question was interesting to me though because it put me in the place of trying again to explain what I AM looking for. I made a draft and we got together to discuss it.

Fundamentally I am exploring how “needy” people contribute to their communities and to the larger society. In our language, and so in our organizations, we divide the helpless from the helping, the needy from the gifted. This division creates a mask, obscuring the reality that one process cannot exist without the other. In any “helping” relationship, both are giving. I am intimately interested in the economic side of this disguised relationship.

(Beyond this, even the idea that one is helping is suspect in my view, but I don’t want to get into that just now – another story perhaps.)

When I speak about economics I am referring to how people together create ways to take care of their daily needs for being sustained, educated, entertained, transported, etc. It has become abundantly clear to me that being poor is part of the rock bed of the economy of our society - an economy that cannot put many people to work as farmers or labourers. A large service and consumption oriented economy is an answer to a post-industrial lack of employment. But a service economy requires people who demand services. For example there can be no case worker without a “needy” person to sustain the process.

People who are labelled disabled contribute to our economy in a number of ways. I once counted twenty-six ways. From the child with autism in a regular classroom who causes his teacher to become a better educator, to the non-speaking person who makes everyone in their vicinity feel happier, people who are labelled disabled, and so people who are on ODSP in particular, continuously contribute invisibly.

The nature of these contributions is that they are relationship focused and so life sustaining without necessarily producing a result that can be counted in our data oriented world. Nevertheless without such contributions relationships themselves are diminished in their quality and sustainability. An unhappy customer shops elsewhere. A lazy teacher deprives hundreds of children of opportunities to love learning.

So, yes, I am interested in the fact that Fred frequently, on days when he feels well enough, volunteers. By his own account volunteering is an activity that has filled many hours of his week for many years. But I am more interested in the contribution that comes through in his voicemail message where he asks for prayers and offers blessings and otherwise puts the caller in mind of a spiritual dimension - an aspect of human experience frequently absent from our daily lives. In his own words: “I am available to provide assistance or help to another. Each day I try to make the world a little better by being considerate, understanding - a simple hello, or just a smile - a simple acknowledgement of the value of the person, the situation or organization.”

Fred and I talked quite openly for about an hour and there are many other details that he did not choose to share in the blog. He shared contributions that belong to some very ordinary jobs and some that don’t typically get paid for. He also shared stories of being blocked from receiving money by community members, family, service providers and Moneybags – all in the name of his so-called disability.

Throughout our time together I was struck by the straight forward manner in which he gave his details, by the occasional twinkle in his eyes and his gentle humour. Perhaps one of Fred’s greatest gifts to me is that he showed how a confident and intelligent man who has met many road blocks in his career and his faith can tell an honest story without leaving out difficult details - and yet do so without bitterness or recrimination.

May my stories live up to the standards that Fred has set for himself.

Judith

Whew! Stinky!

Yesterday I attended my second ODSP Support Group meeting at a downtown Toronto community centre. I got there early as I had arranged to meet up with a gentleman I met there last month. I have begun to write his story from the point of view of the contributions he is making to his community and society. Yesterday we took an opportunity to explore why I want to write like this and how this is different from making a list of ways that he volunteers.

I’ll call him Fred. Fred pointed out why ODSP recipients might well be suspicious of anyone asking them questions of how they contribute. He himself has been audited twice. Regardless of my “good intentions”, information I write here may well be picked up and used in “the system” to raise questions, foster misunderstandings and create delays. Many people would rather not risk that extra burden.

Fred does not use the internet but in a few days I can fax him the revised story we worked on. I believe that the next blog entry after this one will give you a sense of how his compassion and gifts are expressed.

Aside from this exchange I was very glad I showed up for the monthly meeting – so glad that I think I am going to try to be a regular. There were three people (and one dog) present who had not been at the last gathering and it made for a very different dynamic. Last month’s chair, the man focused on advocacy with his reams of data re tussles at the government level to further restrict access to the “special diet” – he was there documents in hand but other concerns dominated the discussion this time.

The conversation still centred on one person - the woman with the dog - but its focus was on strategies for getting as much as possible out of Moneybags. This is of prime interest to me! There we sat, gloating over potential treasure like the very thieves the system deems us to be, reviewing the ins and outs, ups and downs of a very complex set of rules that determine our financial context.
Perhaps the most fascinating moment was when someone revealed that the tracking system used by ODSP was created in another country – Sweden he believed – and that it is known to be full of glitches. One of the most common snafu apparently is the random mailing of letters from – guess who – R. Jackson (see previous blog!) to hapless recipients who get “informed” that they have been overpaid or are being cut off, or ….

It’s a rare and beautiful moment in life to discover that one is right. I am enjoying it!

So, indeed, I did receive a notification last year, relative to nothing at all, that I had been overpaid, that my non-existent benefit was being clawed back, then a few months later that my overpayment had been resolved. The entire set of events that my case worker had absolutely no knowledge of really did occur as an extraordinarily intricate fart of a computerized tracking system that chews the cud of its own self generated data. Whew! Stinky!

I recall the two occasions when I was cut off my benefit. I appeared as requested in a tiny sealed room. This room is provided with one way mirrors in the two doors, front and back, no windows and a massive desk stretching across the entire room, built as a solid piece to the floor. In this room the case worker and the client are structurally separated into different worlds as if coming to a common approach to life would be the most dangerous outcome ever to occur to the Province of Ontario.

Sitting in such a room, I have spoken to three case workers at different times. I now have a very different understanding of why they all asked me prying questions, examined the paperwork closely to see if mine matched theirs, then left the room for twenty minutes or more while I sweated in the airless cell and wondered somewhat panickedly if anyone would come to let me out eventually. Each when they returned was rather sweet and apologetic (and one rather flirtatious). Both times I was promptly reinstated.

I now understand what they all experience but must not tell me. The ODSP case workers spend untold hours of each week of their work life behind the cell doors correcting the chaos generated by the electronic money distribution system they all serve.

A great deal more was revealed yesterday – indeed grist for another few stories I am sure. Perhaps the most heartening was the wealth of resources we each could claim among ourselves. I have the Registered Disability Savings Plan manual. Another has information about the Disability Tax Credit. Another has the ODSP “dictionary” – a primary on the terms that are used to determine if a person qualifies for various benefits.

We agreed to bring and share our resources next month. I am excited with anticipation!

Judith

Letters from Money Bags

I received three letters from ODSP since last I reported on my conflictual relationship with the Money Bag. Happily none of them were about cutting me off. I am counting my blessings and expressing my gratitude to my case worker who took the time to figure out one of the ongoing issues that kept making the system spit me out.

The first letter was to tell me they had paid me too much in January, that being the month I first began receiving my CPP benefit. I will be receiving $55 less on my ODSP cheque for approximately five months until the “overpayment” is reimbursed.

The second letter was truly confusing but the long and short of it was that I received $100 due to the Ontario government making some kind of GST to HST conversion reimbursement. Eventually I realized everyone in the province got a minimum of $100 in this process. It is part of the preparation, I believe, to all of us getting hit with an extra tax in a few weeks.

The third letter was a precise duplicate of the first letter except for a different date. I guess R. Jackson (whose signature is on these letters) wanted to make sure I noticed the first letter. I wonder some days if I will ever have the pleasure of meeting R. Jackson.

It is puzzling (and often more than puzzling!) to be an utterly non-participating member of a conversation. These letters will come whether or not I read them, whether or not I respond to them and regardless of any impact they might have on me as a person. Truly someone could (I’ll bet somebody has!) inserted a Social Insurance Number somewhere in the system and managed to get the system to generate letters to the Social Insurance Number without there needing to be an actual person in any way attached to that Number.

One of the peculiarities of being a non-participating member of a conversation is how utterly unimportant it is to have or express a feeling or thought in the context of the conversation. It makes no difference to the letters, and whatever or whoever generates the letters, if I have any expression about the letters and their content.

I have in the past received genuine letters. Typically receiving a letter causes me to have an emotional response and several thoughts. For example I have received letters telling me that somebody is about to take a legal action against me. Such letters usually cause me to experience initially fear and then some anger and possibly regret. The thoughts I have had in such situations usually lead me to either prepare to defend myself or to explain and/or reconcile with the person who sent the letter. I have never actually been to court for such a suit and so I consider myself an effective communicator and reconcilliator.

As a person, when I receive an ODSP letter, I tend to have similar responses and thoughts. Now this is the problem as far as I am concerned – a waste of psychic energy - as there is absolutely no use in having either emotion or a thought relative to these counterfeit missives (fakes). I am certain that R. Jackson has absolutely no way of anticipating or receiving any kind of reaction from me. In fact I am kind of doubtful if R. Jackson actually exists, as a person I mean.

I can say this with some certainty because while I was away last year on the Peace Tour (www.peaceforinclusion.blogspot.com) I received similar letters about overpayments and finally a letter that my overpayment had been resolved. I had no idea to what these letters referred and no way to respond given my highly unstable situation at the time. When I returned to Ontario I enquired as to the nature of the overpayment and reimbursement, and my case worker had no idea or record of such events. Everything worked out somehow even though I have no idea what the “everything” was all about and never made a single call or sent a single letter in response to the letters sent to me.

I am also puzzling about advocacy and its relationship to this nonpersonal generation of quasi-communication on the subject of my income. Given that humans do in fact feel and think no matter how irrelevant it may be to do so, perhaps advocating serves the purpose of being an outlet for expression on the one hand while on the other having almost the same impact on the system as feeling and doing - absolutely none.

It is said that Ivan Illich, a defrocked priest who stood for responding humanly in the face of many absurdities and atrocities, recommended standing in public in perfect silence in the face of wanting to resist nuclear proliferation. His point was I believe that emotion, thought and language belong to the realm of community and relationship. In the presence of the annihilation of relationship, feeling, thinking and speaking are a way of giving away power. Only silence can sustain empowerment.

I am not certain that Illich was right. I do take his point that when there is no intention of listening then acting like there is amounts to exhausting one’s own personal power. The question remains: “How does one act as person in such a situation?” That is something I am exploring in doing this blog.

Judith

Let Them Eat Cake!

I promised to write about food. So here it is.

When I was part of the employed population my concerns about food were mainly around where to get it efficiently, how to eat it in a socially acceptable way (I have to be fed and it takes me longer to eat than typical, both of which can make for awkward moments at business lunches) and how to dance with my diabetes. The easiest way to address these concerns was to buy a lot of take out food, eat some of it as leftovers and, eat a third of my meal at social functions so I could keep up. I expected to throw away lots of my food but I did my best to minimize waste and to share my abundance. For example, at restaurants, I usually attempted to co-order with someone, sharing my appetizer and dessert, so that we could all order less and eat a broader range of selections.

These strategies are not unlike the ones typically used by people who work for money. In other words I ate like most employed people who have no Mom-like person at home to shop, prepare and clean up. For example I have heard it said that as Poland moved into a capitalistic economy in the 80’s and 90’s (?) there was a huge rise of the use of restaurants and take out establishments.

As an ODSP recipient the situation is quite different. First and foremost I have less than $300/month to spend on food. How can this be? Well, the after rent amount of money has to cover toothpaste, toilet paper, laundry, cleaning supplies, over-the-counter medication, the phone, transportation etc, etc. Under certain circumstances you can get an allowance for transportation. But to get this benefit a person must prove a need and be willing to show up in Doctor’s offices several times a month. I don’t know about you but I’ve certainly noticed a direct connection between heavy use of the medical system and being sick, and it’s not a one way relationship. Too much doctoring can ruin your health. I’m not about to put myself in that type of jeopardy!

The obvious answer to not having enough money is to get free food. As a person who claimed less then $12,000 income last year, I am eligible for the use of the Food Bank. I signed up for one and was qualified to go once per week.

The food bank I have been assigned to is also the provincial distribution warehouse for the Daily Bread Food Bank. (By the way you nearly never can get bread at the Daily Bread Food Bank – Roberts, NOW Magazine, April 22, 2010.) The access for wheelchair users to our local food distribution area is through the shipping and receiving area. I have been warned to be careful of the forklifts. I’ve had the opportunity to see the workings of the system behind the scenes because of this access difference. Regular “clients” never go through the shipping area.

One of my observations is that what I get to choose from when I ultimately get to the distribution room has a much smaller selection range then what is in storage in the warehouse. I can’t say at this point why that would be but it certainly is worth exploring. There is another story in there!

One other comment about the food bank warehouse is that it is in a building next door to the Toronto Police College and otherwise surrounded by industrial activities. A person who walks or uses public transportation has to carry several loaded shopping bags at least 7 blocks to get to any residential area and 1 long block to get to a bus line. Clearly many of us who use the food bank are there because we are not “fit” in the usual sense. This means that “clients” spent at least $6 on 2 bus tickets to use this service. That’s $24 a month out of a meagre income.

Once past the shipping area there are 3 sign-in steps. Typically the food bank is open 4 days a week for approximately 4 hours. If it opens at 2pm the first sign-in time is 1pm. So people come into a large room, put their name in a book and sit on a bench to wait. Sometime during this waiting period each person goes to a small office where a volunteer records their use of the food bank, ensuring that they are using the service only once that week.

This step is set up as a job training site. The person updating the record at the computer clearly is unfamiliar with data systems. The data enterer issues the “client” a white, dry erase card that lets the other volunteers know how much food the “client” is permitted to have. My card will say “1” in black marker ink At this point I may proceed to the 2nd waiting area – and wait.

When the door opens between the 2nd waiting room and the actual distribution room I sign my name into another registry and hand my ticket to another volunteer who has to refer to a dry erase bulletin board on the wall. This board has an updatable chart that lets the distribution volunteer know what categories a person with a “1” may select from and how many items from each category they may have. People with different numbers and/or a sign on their card that indicates there is a baby in their household have allowances that can vary by both category and quantity. This moment of entry is rife with confusion as distribution volunteers and “clients” assess what their real choices are.

My sense of it is that confusion arises from numerous factors. One is that the volunteers who distribute the food are not clear about what food belongs to which categories. Secondly, every volunteer I have met genuinely wants to give me something that I would like you eat and that I know how to use. This can lead to an interesting dance because some volunteers have very different food preferences and experiences from my own. All have been visibly frustrated by the limitations of what is available to them to give out to me.

I don’t claim that my experience is the same as every other “client”. For one thing I have a “worker” with me. My PCA who has driven me to the food bank comes in with me to assist me. The officials of the food bank (of which as far as I can tell there is only 1 or possibly 2) have deemed that this means that I should always go to the front of the line. It also means that all the volunteers instantly talk to my “worker” instead of to me, and my “worker” is trained to get them to talk to me instead of to them. And so we go through a very friendly and fascination dance of pointing and waving and negotiating what food I will actually get to take home.

As I mentioned before I am diabetic. I PRIDE myself on the fact that I am very good at managing my blood sugar so well that my bi-annual test typically indicates that I am not diabetic. This of course is not true and if I ceased for even two weeks to do what I have taught myself over 15 years to do to manage my blood sugar I would be in a serious situation. I also have chewing and swallowing difficulties. The food I eat has to be low in sugar, high in protein and moisture, and easily turned into a pasty but tasty mix.

Ideal foods for this process are canned tuna and salmon, breakfast cereals with no added sugar, juices with no added sugar, canned chilli, and the like. The only protein that I’ve seen in the food bank with one exception is hot dogs and sandwich meats. Milk is frequently available but typically so old that it won’t last a week. The only cheese, if any, is the processed, sliced kind. There are endless cans of pre-sugared anything you can imagine, lots of crackers, lots of sweet snacks and a few old and tired vegetables. Out of this I must design a diabetic-friendly menu. (By the way in a span of 5 weeks I received one roll of toilet paper.)

Obviously I can’t depend on the food bank to stay healthy. I, like other people who use the food bank, quickly invented a number of strategies for coping. I went to the support group meeting to talk to people about their strategies, but I had little chance. As I mentioned in my previous blog entry (Exploration) advocacy tends always to be the main topic on the table. But one woman did tell me some interesting ideas.

For example, she volunteers at a place that is a distribution point for retail organic food. Volunteers receive a free box of food that is individualized to their needs and preferences. The volunteers have to be able to lift heavy boxes. (I guess they don’t have any forklifts.) I’m willing to see if there is anything that I could do for that group that would help them out and give me status!

Last Friday the ODSP support group did spend considerable time talking about the ongoing tussle between the Government and the recipients over who is eligible for the “special” allowance for “special” diets. Many service providers have had their hands slapped for signing up ODSP recipients as “special” in their food needs. Because of this practice the government is trying to restrict the use of this allowance. I have not yet asked for the special allowance because I do not want to get stuck in the fight if I can avoid it.

So here are some of my strategies. Some of my personal assistants bring me food that they or their colleagues have left over from other functions. In turn I sometimes give them some of the food I’ve accumulate at the food bank that I can’t use - foods like sweet snacks, certain kinds of canned beans, or overwhelming amounts of pasta…you can always get pasta at the food bank. Secondly I allow my father and others to buy me lunch on a very frequent basis. Thirdly I have been adapting recipes to mix various purchased food with food bank offerings. A Polish deli in my neighbourhood sells bottles of pickled herring at a very reasonable price. It’s a good breakfast protein served with the Swiss Chalet sour cream mini-containers sometimes available at the food bank. The jellied dessert mix is too sweet but mixed with the cranberry sauce that one volunteer gave me three large cans of it gelled into a less sweet dessert that goes down well with the pain pills I have to chew. (ODSP doesn’t cover the liquid version of Advil and I can’t swallow well!) One week we made a large soup out of the tired vegetables and some of the food bank cans of chicken noodle soup. We put a lot of it in the freezer.

My chief point is that very little of this has to do with eating. So much of it has to do with negotiating a path through other people’s vision of what poor people need. Most “clients” try to be nice about it, but the fact is that we go to enormous physical, emotional and mental effort to manage the help that is provided because we are “needy”. But imagine the life of someone who spends much time and energy, and scarce bus fare, to use a food bank, then at home spends more time and energy to prepare and store lower quality food in such a way that it will last at least a week. Where will this person also find important time, energy and mental capacity to learn new skills and find a job?

Imagine a different picture. Imagine the same person taking real money or a widely accepted debit card to the stores and restaurants of their choice, socializing with neighbours and people with real jobs and sharing time at typical coffee break establishments while attending a local college or retraining program. Leading the same life style of a valued citizen can make available a very different future.

My conclusion continues to be that the poor are intended to be poor!! The system ensures that it is so. Poverty IS the future intended for the poor.

I believe that all the volunteers I have met so far are people who are on ODSP or some other kind of stipend. It is my intention when it is feasible to interview them about how they negotiate being poor and contribute to the poverty system. Theirs are definitely other stories!

Judith

Exploration

I’m not sure which other story I intended to talk about this time. One of these days I will go back and pick up some threads. Yesterday I went to my first ODSP Support Group, and I want to say something about that right now.

When I originally heard about the ODSP Support Group, it was my intention to go for my own benefit. I wanted to (and still do!) share strategies and get the value of other people’s experience living this way. I also wanted and want to sustain my personal identity as a non-ablebodied individual (ie. a crip). (There is another story – my personal struggle to be seen and to know myself as both competent and non-ablebodied.)

Now I have also committed myself to keeping up this blog on a regular basis. It is my intention in doing this blog to highlight other people’s stories as well as my own. Going to the support group has taken on a research flavour. I am expecting that I will run into people who will be willing to share their perspective in this blog. At the same time, I must be cautious as quite naturally, people who are negotiating poverty as a way of life don’t necessarily want other people to know very much about their story.

When I arrived at the meeting there were three people present and another person arrived some time after me. One man clearly had the “chair” role and dominated the majority of the conversation. As the hour and a half unfolded it became clear that he has a WEALTH of resources and skills in a number of areas, from how to pull down TV signals that are being blocked from non-paying viewers to how to analyze the hidden agenda motivations of city and provincial politicians.

At first it was difficult to get a clear view of what the others’ contributions to the group were, mostly because they sat quietly while the Chair talked. But I am a patient person in some contexts and pretty good at asking questions that throw people into different social dynamics. Eventually other people began to speak up and share their experiences as well.

Oh my God, I’m hearing another story coming along. About ten minutes into the meeting I began to feel that old familiar feeling of excitement over the possibility of getting really involved in this group and steering its dynamics to a more democratic conversation. But, (damn it) I am plenty busy enough already and I am not going to take on yet another project!!!

So I took another persons phone number – he does not have enough income or social capacity to have a reliable internet source and his own email. I am hopeful that he and I will be able to create a page for this blog. His contributions about negotiating poverty were intriguing.

I got what I went for in a number of ways and I certainly intend to go back. Firstly I got some good ideas about how to get access to free food that is worth eating. Secondly I got a really good look at what the social and political landscape looks like to the people who use the ODSP benefit.
I want to write about food as a topic in my next blog entry. Right now what I want to say is how disabling I think it is that vulnerable and marginalized people so quickly adopt the agenda of fighting the system. Basically, for an hour and a half, I heard stories and commentary about a long and largely fruitless battle that people in Toronto have engaged with the city and with the province around the impact of their poverty.

Of course people need to fight back, or so it would seem. Somehow we imagine that those who created and run a system that leaves us busily scrambling for basics and daily managing the agenda of the system – we imagine that these people are simply ignorant of our situation and that if we tell them often enough and loudly enough and in as many ways as possible what we’re struggling with then they’ll fix it.

In my view it is clear that having us scramble IS the agenda of the system. The more we scramble the more the system is operating as it should. There is no end to the amount of begging and scrambling that the system desires. The more we do it the bigger it gets.

In my lifetime the poverty-inducing social service system has grown humungously, far outstripping the growth in population. It is a huge part of the Ontario and Canadian economy. Generating and managing poverty is what keeps hundreds and thousands of politicians, social service people and managers employed.

Another essential question for our society to answer if there is ever going to be a real reduction of poverty, or - God forbid – an END to poverty, we have to figure out what else these people, the bureaucrats, politicians and system managers, can do with their lives.

What is largely hidden from our own eyes is how gifted and skilled we are at living the way we do. It is my intention in this blog to highlight the many and valuable contributions that people who are labelled as “needy” are making to society. Some of the stories will be my own. Some will be from the people I meet along the way.

So far I have largely been setting the context. It’s a tricky part of this work because most readers will hear me as complaining. It is automatic to assume that people who need something are complaining. It is very difficult for us to hear ourselves or be heard as saying something that is a contribution. Largely, we have had no practice in speaking as valued citizens. Certainly no one has ever taught us or encouraged us to speak as valued citizens. If we were actually seen as valued citizens it would be impossible to sustain such a massive effort to help us.

Before I go any further I must make it clear that I am not advocating for abandonment. There is no such thing as a citizen who is not supported to participate. In other words, a fundamental purpose of what we call society is to provide the infrastructure that supports people to participate in the society. The citizen and his or her society are constantly in a dynamic relationship.

A valued citizen enjoys support which is transparent. This means that a citizen is continuously using support while virtually never noticing that she or he is using support. The person who jumps in a car, hops onto the freeway, arrives at work, turns the keys over to a valet, gets on an elevator to the fifteenth floor, turns on the internet and checks messages on a blackberry and asks her executive assistant to organize a meeting with lunch provided rarely thinks while doing all this that she is accessing the resources of at least eight or nine integrated support systems and the combined efforts of hundreds of thousands of people who sustain the roads, the car industry, the internet, the phone system, the employment system, the food distribution system, the elevators, the hydro-electric system, etc. She probably imagines herself to be a competent, independent-minded, creative multi-tasker.

A chief characteristic of support systems that service valued citizens is that the citizen can forget that the system is there. Participation is hindered when the participant has to manage the system. Remember what happens when your favourite freeway is blocked by construction and you have to start renegotiating your trajectory, your timing and your temper.

The “support system” built around the “needy” is designed to be constantly in the face of the user with no transparency or invisibility. The user of the poverty system is encouraged in every possible way from the carrot to the stick, to participate in managing the system. The obvious result is the person’s participation in creating society is eliminated or nearly so. The invention of “neediness” eliminates democracy.

Support systems for valued citizens can be highly individualized. The issue is not that so called needy people have odd characteristics that don’t easily fit into regular life. It is not really an issue that somebody who has seizures or who uses a wheelchair or sees and hears things that other people don’t is “odd” and may require very personalized support in order to participate. Executives of multi-national corporations have lots of minute by minute personalized support on top of the background of society-wide support. The issue is that our society is not set up for full participation.

Our society designed to limit full participation to approximately fifteen percent of the population. This means that there must be a justification for minimizing the participation of eighty-five percent of the population.

The invention of neediness has taken hundreds of years to unfold. Who knows how long it will take to invent something else – something we can call genuine democracy!

My commitment is to continuously put forward that all people contribute to society and would do so much better if we were properly supported as valued citizens. Currently poor people are contributing as poor people, spending hours and hours everyday supporting the jobs of the people in the service industry. Most of the time we add to that contribution by creating advocacy groups and “fighting the system.” I believe that it is important for us to minimize the fighting and take that time and energy to discover our own giftedness and to imagine ourselves as the valued citizens that we actually are.
Only then, I believe, will we actually be able to shift the society into the democratic future we all so richly deserve.

Judith

Assets

This story may not make much sense unless you have read “Reinstatement”, the previous blog posting, so if you get lost try reading that one.

Although you might think that the reason the ODSP benefit was invented was to support people with disabilities in meeting costs that are prohibitive so they get a “level playing field” that isn’t the main reason behind it. ODSP is a part of the Ministry of Community and Social Services – bluntly, this is Ontario’s welfare ministry.

The ancient root of welfare is the “poor laws”. In the early days of capitalism, industrialization and understanding of genetics and evolution the belief was held that it was a personal lack of will to be poor. Laws were made to make being poor a criminal offence. Prisons and workhouses were built.

Obviously, many people with disabilities often cannot work at regular jobs so many were poor. Since having a disability is clearly not a matter of lack of willpower even the most individualistic, self-made folks had to figure out a different approach to creating sustainability for people with disabilities or face them starving to death in the streets.

So tacked on to the poor laws was a definition of a loop hole which says that “being disabled” is equal to being “unemployable” and in such a case a person is entitled to welfare. Of course there also had to be a way to close the loop hole, so programs were also developed to “rehabilitate”, “train” and “educate” so a person could become employable. Then, of course, if one actually becomes employable, suddenly one is legally not disabled, the welfare disappears, the extra costs swamp the budget, poverty ensues and one is a criminal.

This definitional trap has been dressed up in many different forms over the decades but never has the fundamental idea of welfare been successfully challenged. The attitudes towards poverty and disability are still that if you look hard enough at the circumstances of a person with a disability you will find either a lazy bum or a criminal or possibly both!

To successfully be disabled in the view of the system – ODSP – you must be poor, unemployed and be literate enough to inform your “Case Worker” each and every month of exactly how much money did or did not flow into your possession. The on-the-ground definition of “poor” is that you must have no more than $4000 in all your bank accounts. The on-the-ground definition of “unemployed” is that you may not get paid for work, and if you do it must be reported and your cheque will be reduced at approximately 50% of amount earned until you don’t get a cheque, and get cut off from the medical, dental and equipment benefits as well. (For me this figure is approximately $1700/month.) The on-the-ground definition of “literate” means you can successfully check off boxes on a form that requests information that usually has absolutely no relevance to the person’s actual circumstances, and that you can fax this form on time to your “Income Support Worker”, even when the ODSP fax is jammed up with the other hundreds of faxes people are trying to send.

Now to my situation. I was employed until October 2007. As a consepquence, when I retired I had earned a small pension fund, a little bit less than $12,000. This pension is “locked-in”. That means that I cannot touch it until I am 65. I had also been saving over the years and although I had not been a very successful saver (for all the reasons mentioned in the previous blog, “reinstatement”,about extraordinary costs) I had another Mutual Fund. Finally, and as a matter of great generosity of my mother who died 3 years ago and my father who is passionate about the economic well being of his 4 children, there are 2 GIC’s with a total value of $35,000 that are set up with me as having Right-of-Survivor.

In other words there is just under $47,000 that will come to me some day, but not until either my father passes away or I turn 65. The other amount of money disappeared last year in the stock market crash and my need to pay for my own personal assistants for five months (that’s another story that is well documented in the blog www.peaceforinclusion.blogspot.com )

There is a stipulation in ODSP that up to $1,000 of assets can be segregated. This provision is part of the circular loop hole situation where the state recognises that disability is not necessarily equal to poverty and criminality. However, my financial adviser continuously runs into difficulties in establishing the segregation of my accounts because on the one hand two of the accounts are actually my fathers until he passes away and the other one is locked-up in some kind of locked-in issue that is frankly beyond my understanding.

The ultimate result is that ODSP, who by law is allowed to observe all of my bank accounts all of the time, questions whether I am poor enough legally to receive it’s benefits. It is of no matter that I have no access to these funds and cannot spend anything from them. I still fall clearly into their criminal classification.

So approximately every month or 2 I get a letter, I get cut off, I go into their interegation room (that’s another story!) and I get a reprieve by explaining the efforts my financial adviser and I are making to please the banks and get permission to segregate the funds.

So far, so good. This criminal is still on the loose.

Judith

Reinstatement

To try to make this story make sense, let me take you back a few years.

I have been a person with quadriplegia all my life. I have a rare muscle weakening condition and essentially have no more strength than an infant. I am sixty years old.

I could have lived on a pension since I was sixteen when a small allowance was granted to teenagers like me to assist with extra costs of living. Essentially my Mother took that cheque, probably spending it on the gas needed to drive me to and from school every day.

I chose employment, getting my first paying job in the summer between 1st and 2nd year university. The only time I was on a disability related pension was for a few months while recovering from major surgery in my mid-twenties.

When I decided to leave paid employment in 2007 and live on the pension from the Ontario Disability Support Program (ODSP) it was something of an adventure for me. I had met many, many people over the years who live from this income and spend their time quite productively volunteering in some way. I wanted to, and do, build projects and research around the idea that Inclusion makes people more peaceful and therefore is a road to World Peace. (www.peaceforinclusion.blogspot.com) It seemed that an ODSP pension could make focusing on this work more feasible for me.

You see it seemed like choosing between two paths that both involve managing one’s income carefully and creatively. Employment brought the potential for more income, the accumulation of more assets and more credit backing. It also meant that costs like a $22,000 wheelchair would fall 25% to me and fixing that chair as it aged and making a car accessible ($19,000) were 100% my problem. ODSP allows for not more than $1,700/month – and that’s with deliberate and delicate management of every entitlement – and no more assets than $4000 and of course no credit, but it does cover medical, prescription, dental and access equipment.

Employment ties one to the employer’s agenda. After years of working at the top level of the bottom rung, not being encouraged or allowed to take on other positions or projects I was qualified for, being assigned forever to the token “disability” position, and watching as others in similar positions lost their health and self respect, I began to consider that maybe I could make the ODSP option work, i.e. find freedom in poverty.

Making a go on such a small income is tricky, but that’s another story! This one is about getting suspended three times in one year.

There are three things about my life that have led the powers of ODSP to find me indigestible in the recent past. The most recent is that I filed my claim for a Federal income tax refund after April 30.

Now as you most likely know there is nothing technically wrong with filing your taxes after April 30 if you know you don’t owe Revenue Canada anything. Many people go for years without filing – no problem! It’s like giving Canada an interest free loan and the government isn’t going to complain about that.

On the strength that I wasn’t going to owe anything the guy who does my taxes didn’t do them until after the 30th. He prioritized his clients who DO owe Revenue Canada something.

Now, how on May 5th, does ODSP know that Revenue Canada doesn’t have my tax form yet? And why is it of such interest to them that they sent me a letter that day threatening suspension from my benefits by the end of this month? I don’t really know – it’s not in any manual or on their website.

Anyway I filed, I made an appointment, I went in, I am reinstated for a month.

Next time I will tell why it’s only for a month, because that’s another story.

Judith

Cut Off

Now, That’s Another Story…

This blog started about five weeks ago, today being Mother’s Day, 2010.

It started when I got a letter from ODSP saying I was cut off.

ODSP? It’s the Ontario Disability Support Program – a program of the provincial government in Ontario that will pay an adult who has officially been classified as disabled an amount of money for living expenses.

There are all sorts of other things you have to be to get this money. The words “patient” and “persistent” come to mind. “Genius” is another one, because it takes a certain level of mental gymnastics to figure out what the ODSP workers are talking about when they do things like send letters informing you that you have been cut off.

It being the second time in a year that this has happened I was annoyed and I phoned a Toronto Star reporter to see if I could write articles about how poor people manage the system which “helps” them. There was no one at The Star who wanted such articles. But the idea did lead to this blog which lets me tell some stories. This blog also may help add to some research people are doing about government policies and how they affect people who get income supplements because they are poor.

Back to a few weeks ago… My financial advisor who knows a lot about ODSP told me they send out letters like that one every now and then – seemingly because they want to scare people. It worked! Anyway the next Monday I spent about two hours on the phone, mostly waiting while recordings told me that calls would be answered – eventually. I tried every extension that I had ever been given, and the receptionist, and was able to put messages in about four voice mailboxes.

Several days later my Client Representative called to let me know it was not a real letter - just something I had received because some department somewhere hadn’t gotten the information yet that my CPP pension had started soon after New Years. Even though the money has already started being deducted from my ODSP pension, somehow higher up in ODSP someone thought I was trying to hide it.

My Client Representative got me reinstated. My May pension was deposited in my bank account OK.

Ten days later I got another letter. This time I have to explain why I haven’t reported my 2009 Income Tax Assessment immediately, and in the meantime I am cut off – again. Of course the Income Tax year has barely ended, and I don’t have my final assessment yet, but that’s another story….

Judith