When Independence Isn’t Worth It…

“The best way to take control over a people and control them utterly is to take a little of their freedom at a time, to erode rights by a thousand tiny and almost imperceptible reductions. In this way, the people will not see those rights and freedoms being removed until past the point at which these changes cannot be reversed.” – Pat Miller (from Willfully Ignorant)

I choose the above quote based on my topic today.  It is very personal and very true.  I know too many people who are not paying attention and the marginalized are paying the price.

It has not been a good couple of months and I have been fighting a lot of demons. Those demons are created by the discovery of the quiet erosion of hard fought for gains.  I am becoming increasingly aware of how many programs that were developed in the 80’s and 90’s have now quietly been stripped away.  Lack of proper access has led to social isolation and I find myself becoming increasingly bitter.  Bitterness accomplishes absolutely nothing and when you are socially isolated you need to get that venom out before you are poisoned.  It’s time to start writing again.

CONFESSION TIME – I survived polio at age 3 and  have fought for my independence all of my life. I fought hard as an activist for civil rights in general with a major focus on disability rights and, in particular, #access rights.  Hitting retirement I am discovering there are new realities. The modest amount I had put away for retirement does not keep up with the rental market.  Every time someone ignores #accessible living others pay the price, in part, due to so many peoples belief that “there are programs there to help”. WRONG.

I worked all of my life and put as much away as possible for retirement.  Unfortunately the long term wear and tear on my body forced me into retirement early so I started collecting Canada Pension Disability at 58.  What many people don’t understand about that is those “disability benefit” years are deducted from your CPP when you hit 65.  For each year you are on CPP Disability they deduct a percentage off your CPP when the change happens.  In my case my CPP dropped from the disability amount of almost $1000/month to $642/month.  The RRSP I had been working on was converted early to a RIFF to supplement the CPP Disability amount.  You can’t live on a $1000 per month, not in a wheelchair.  The RIFF monthly payments would help cover costs until the Old Age Supplement kicked in at age 65 but I didn’t realize how much my CPP would drop at 65.

With the drop in income we also face a cost of living increase for disability related expenses.  Between increased disability related medical costs (a new RoHo Hybrid wheelchair cushion costs $820) plus a rental market sorely lacking accessible “affordable” apartments, costs sky-rocket.  You throw in local governments that don’t enforce accessible building codes fuelled by the erosion of federal/provincial governments programs over the past 25 years and you are left with a bleak future.  Currently 62% of my monthly income goes to rent. Anything affordable tends to be basement suites or two story walk ups. Not exactly wheelchair friendly so you take what’s available to avoid the street.  I lived on the street when I was 17 and have no intentions of going back at 67.

Last year I needed some wheelchair repairs and annual vehicle maintenance (new tires for everything as an example) so decided to take a one time withdrawal of $10,000 from my RIFF. I didn’t really need that much but I had realized (after doing the math) that my monthly costs were $250 to $300 more a month than my income. By taking out the $10,000 it provided an cushion for those additional costs and medically related expenses most people don’t understand.  I did this, in part, because I was going on the waitlist for a subsidized assisted living apartment.  I was able to access the subsidized waitlist because I qualified for the Guaranteed Income Supplement.

What I didn’t realize was that $10,000 put my income over the limit for the Guaranteed Income Supplement “GIS” (all $18/month of it).  Okay I could get by without that. That’s when I started to find out lost of the GIS status had a lot of ripples.

All of a sudden I no longer qualified for the Premium MSP coverage (an additional cost of $42/month). The lost of the $98/month rent subsidy, the doubling of my Pharmacare deductible (from $450 per year to $900). But the final straw was the end of subsidized home care (they come in once a day to do my dishes and once a week to haul out the garbage). Island Health called me last week to tell me since I am no longer eligible for GIS I would now have to pay $31.38/day for, basically, a dishwasher. The services I could use, like housekeeping, are not a service offered by home-care.  By losing an $18/month subsidy I gained close to a $1000 in other costs.

What I was looking for was some housekeeping service, that’s more difficult in a wheelchair.  BC’s community health had removed housekeeping as a home-care service about seven years ago.  I am told by Island Health that I would have to “accommodate” a little.  I already live in an “adaptive suite” that has a bathroom I can’t get my wheelchair into so I believe I have done my part of accommodating.  I have now cancelled that service.  However without that service I also get removed from the waitlist for subsidized assisted living.

It wasn’t the lost of $18/month GIS that hurt, it was the ripple effect of no longer qualifying for GIS. This is the reality of what awaits all of those who grow up with a disability while maintaining their independence.  Meanwhile, according to those close to me, I am too “emotionally” draining to talk with anyone about this so social isolation has become my life style and social media my way to express. Welcome to the world of the “non-privileged”.  How much is independence really worth and what is to be gained by fighting for independence?  There has to be dignity or what is the purpose of living…

With all of this said my heart and thoughts go out to the victims of Sutherland Springs, Texas.  Thanks for listening…