Notes #1 from a Graduating TAB

 I was recently diagnosed with a cancer. Like anyone who receives that kind of news I was shaken and in disbelief and I suspect that may still be the case. However, I thought it might be of use if I shared some of my thoughts as I progress on this journey. I shared this idea with a friend and he encouraged me to go with the idea. So hear it is “Note #1”. Hopefully you will read much more.

“TAB” is an abbreviation for a “Temporarily Able Bodied” person. I guess it covers the majority of people at least for part of their lives. I first heard the term “TAB”, a number of years ago, from a friend of mine who has had a life long disability. I know that the term did not originate with him but he was trying to express the frustration felt by so many people with disabilities in dealing with those who do not have a current disability and do not seem to recognize that their actions, or inactions, now could come back to haunt them in the future. Disability is not a “we and they” thing, in the final analysis it is most often a “we”.

I have tried to educate myself on issues of fairness and equality. I think this interest comes from my experiences as a child when I was bullied and abused and I pledged myself not to standing by and watch such things happen to others. When I look back now I’m not sure I was true to that pledge and I certainly do not believe the world has changed that much. It appears to me that the abuse may have become more sophisticated, indirect, systemic and even impersonal here in the Western world but in much of the rest of the world it remains fairly fundamental and direct. Despite some steps forward I worry that we are loosing the battle of building a caring informed citizenship that want to build a better society and world. I fear that we are well under way to consuming our way to oblivion personally and environmentally. That may even be true of me. One of my sincerest hopes right now is that my rather philosophical outlook will help me in facing my current challenges but I am not at all convinced of that.

I think I may still be in a state of shock and denial. Although I am seeking help right now I am still feeling a little like an observer in my own life. This is happening to someone else and I will wake up and this bad dream will be over. Perhaps that is because I am still waiting to see a specialist and am not yet fully convinced that this is not a mistake although that is not likely. The next big question to be answered is if cancer how bad is it?

I’m going to stop for now. I need a break. Will not promise that all this will make sense or even link that well but if you find it useful let me know.

Note #2 from a Graduating TAB

Hello people I am waiting here!!! It has now been sixteen days since I was referred to a specialist and nothing yet. Granted the specialist was on vacation until four days ago so I can understand some delay. I found out about the vacation when I phoned after the first week and got an answering machine “asking for messages not to be left and providing a number for emergencies”. I complied and waited. I phoned the day the specialist was scheduled to returned and got a message saying “they had a high volume of calls and only to leave a message if it was an emergency”. Again I complied and waited. The following day I phoned again and left a message with an alternative contact number and telling them “I would appreciate some indication of possible wait time since we wanted to make some plans”. Now two days further on I have heard nothing.

I have been on the Internet and know that the possible outcomes for me vary greatly from a relatively poor and short-term prognosis to a more long term and show decline. The only way to know is with more tests. As someone who has been blessed with good health most of my life I am not used to having to hang on other peoples actions. Waiting is a pain in the ass and I marvel at how people with more long term problems deal with it.

Do not get me wrong I am and will remain a strong supporter of the publicly funded health care system in Canada. Universal accesses based on need must remain the cornerstone of our system but that is not to say we should not look for more effective and efficient ways to provide services. I do not say this out of ignorance because I lived in the States and Britain and still have family in both places. Their systems work very well for some, possibly event the majority, but at a greater overall cost and with more gaps especially at the bottom end.

Having said the above I am not at all convinced that our current Canadian system can and will survive. In many ways Canada is becoming less equitable and we cannot maintain one isolated “sacred cow”, Medicare, without an equitable social and financial base on which it can be sustained and we may be forced to make some distasteful choices. Taxes systems that favour the rich and corporations, international agreements that favour monetary issues over human ones and medical professionals who would rather pursue big bucks than humanitarian goals all weaken the system. Do not even get me going on political parties who are willing to use personal human tragedies to promote their own political goals. “When the watering hole starts to dry-up the animals are forced to start looking at each other differently”.

How long is it going to be before the USA challenges Medicate under NAFTA as “providing an unfair trading advantage to Canada”? The fact of the matter is that Medicare does add significantly to worker productivity estimates in Canada because of medical costs not being born directly by employers.

The trouble with all the above is that it is theory. Is it going to help me if I do not get the treatment I need when I need it? Right now I just want answers as a human being.

Thanks God for caring friends and acquaintances who have provided encouragement. More to follow.

Boy how time passes.  Sorry for no update before this but have been away for a while.  Just decided I needed some time to myself.  No responses to my previous ramblings so I am not certain if anyone is paying attention but I guess I will go ahead anyway.  Doing nothing is so easy and to be frank about it one of the reasons I am doing this is to get myself and hopefully at least one other person off their butt.

After “Note #2” I called the specialists office again and actually got to talk to someone.  After being told “I probably would be on a waiting list for at least six weeks” I actually got an appointment about two weeks later.  Surprise, surprise!!  But of course being me I had to run all the possibilities through my mind, “am I being contacted early because they know something I don’t”?  I know they are trying to help but I became even more convinced of imminent doom when I received an information package from the Allan Blair Cancer Centre (ABCC) prior to seeing the specialist.  I found this very confusing since the specialist I was referred to was not at the ABCC.  The package indicating that “my doctor had referred me to see an Oncologist at the ABCC and inviting me to “attend a New Patient Information Session” the day after I was to see the first specialist.   I guess over service is better than no service.

The first Specialist told me I did not need to attend the Patient Information Session because he would provide me with what I needed, which was fine with me.  I did end up going to the ABCC some time later and they were very nice.  I thought it was kind of funny though when I was given a black gift bag, from the Canadian Cancer Society, full on goodies and information.  My immediate thought was “black, I wonder if they realize it looks like something you could put an urn in?  I suspect others have had similar thoughts.  To be fair I would have to recognize the package is well intended and the information useful, but please people find a more uplifting package!! 

I guess the bad news is I do have a form of cancer.  The good news is that at least at this stage it is a ”very slow progressing ‘chronic’ cancer that given my age and other factors does not require aggressive treatment right now”.  At this stage I am just “being monitored’.  Interestingly enough no one has yet discussed life style issues with me (i.e. how I can lessen my chances of further problems) but perhaps that is coming?  In the mean time I am seeing a Naturopath, trying to watch my eating/drinking and exercising.  All in all things could be a whole lot worse.   I guess you could say  ‘I’m still in the process of graduating’?  That’s maybe a good way of looking at it, for many people becoming disabled is not an event it is a process.  Reinforces the old “we and they” point I tried to make in my first Note even clearer.

As I mentioned in my first “Note” I am not exactly a novas to “issues of fairness and equality”.  Contrary to apparent popular belief people with disabilities are not treated with dignity and respect in this country.  I am still disappointed, but no longer shocked by the double standards and abuse people with disabilities put up with.  On the one hand they are routinely disregarded as potential employees by employers, who make little or no effort to accommodate them (check out the employment equity and education stats for yourself –although even they paint a rosier picture than reality), while they are hounded by government or private insurance companies to constant prove their status as a disabled person.  These organizations still unleash the eligibility Gestapo who gleefully go after the weak, unaware and uneducated to protect government budgets or corporate profits.  “We are liberating them to find their own potential and we all know they are faking it anyway!!”  

A friend of mine recently received a letter asking him “to report on his volunteer activities over the last number of months”.  We are talking here about a person with a clear, valid and documented long-term disability.   The implications of this are shocking!!  I have already had friends of mine talking about withdrawing from an active and involved life in fear of such scrutiny themselves, not because they have done anything wrong but because who can trust a system that would not only approve but foster such abuse in the first place.  I know there are lots more stories out there and I for one would like to hear them.

By for now 

Eligibility Gestapo

I want to pick up on Graduating TAB's (Note #3) comments about the eligibility Gestapo.  The eligibility police don't always wear hobnailed boots and goose-step in tight formation.  They are much more subtle: they rely on the disabled person's fear of losing service or entitlement.

It just doesn't make sense to continually harassed people with long-term disabilities about their eligibility for disability support programs and services.  An individual on social assistance with advanced Muscular Sclerosis (MS) and who is unable to work, should not be forced to continually defend themselves against the eligibility police.  The MS is not going away. 

A person with 2 prosthetic eyes will always be blind.  Call off the eligibility police unless there are some dramatic and frankly miraculous changes in the labour market. 

I am appalled at the waste of life and talent because of the eligibility police.  In our community there are individuals with long-term disabilities receiving public or private income support who dare not volunteer their time and talents to help others because they fear losing their income support.  Who is to blame -- the conservatism of the times has the poor and homeless sleeping under bridges.  Shameful.

Watchful Consumer

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