“I think complacency is what you allow it to be” – Draymond Green
I cannot express the level of my anger right now. It’s Thanksgiving and suppose to be a joyous day spend with loved ones (or those close) celebrating the things we are thankful for. Instead I am sitting here pretending to be busy while the thoughts in my head just radiate frustration.
I make a lot of excuses for a lot of people based on that “Pretending you’re okay” statement but I have had years to polish it. I have five generations of people coming and going through my life and I have learnt (took a while) to just be quiet about my own feelings. When I do express my true feelings I am told I’m emotionally draining and most people don’t want to come by to be drain. I learnt years ago to avoid any topics regarding the multitude of “micro inequities” many marginalized face. However today, due to a particular case, I can’t let this fester, I can’t just be quiet otherwise I am everything I am writing about.
I’ve run out of peppers to slice, run out of items to prepare so I have a few meals backed up in the freezer, run out how much house work I am prepared to do so I can no longer dodge the anger I am feeling. I know I go on a lot about access and city maintenance of sidewalks (or lack there of). I will often allude to policies and regulations that are only enforced as a matter of convenience, when someone pushes it. Outside issues.
I try to work with others in the community to make it a little bit more inclusive for everybody but my access advocacy generally ends at the doorway of my condo unit. I deal with the inside condo frustrations on my own. Little things like not being able to get on my deck, unable to reach the stove vent fan, having to wait for someone to visit so I can get them to adjust my thermostat and the list goes on. They are frustrating but not life threatening.
I don’t talk about the morning anxiety that “first” transfer of the day from my bed to wheelchair causes. I don’t talk about that inkling of fear that is there every morning not knowing if I will land properly in my wheelchair or miss so I can spend however long it takes to get up off the floor and into the chair hoping nothing major has been broken or torn. I don’t talk about the frost bite on my fingers tips developed while wheeling to Safeway on a brisk winter day. Yes I have gloves but they get wet when your pushing a wheelchair and that transfers to your fingers.
I try not to dwell on how many drugs I may have to take that day so I can keep myself moving. Yesterday I spend almost ten hours dozing in my recliner due to fatigue generated from pushing past my limits the day before. I don’t talk about the hours I spend researching why a policy or regulation that was created 30 years ago is no longer enforced. I don’t talk about those things because they are mine, those are the personal issues that drive people away.
When I do talk about it it is generally to the person I feel is responsible for it. Little things like why the fire code requires a list of vulnerable individuals living in a condo. I have spend almost a year explaining to the condo management association that they need that list in the fire room kept in the lockbox that only first responders have access to. I have send the four page code document to management showing them it exists. However, as it shows in the case I am speaking of, it seems to be profit before people. All I get from the condo management company is “we didn’t know that”. Does not paying attention to regulations that were established before most of these management people got out of play school really count as an excuse? Just because you weren’t there when they were developed doesn’t mean they don’t exist. Too many people, these days, have no concept of “due diligence” which many, like myself, pay the price for. Come on people, look past your personal comfort bubble and wake up.
There are so many “little things” it sometimes seems insurmountable. Society should be an ongoing evolving process. Forgetting or ignoring our past does not guarantee forward movement. I have lived with the results of that type of silence for way to long. Yes I speak out but I speak out from the perspective of “lived experience”, a luxury many new disabled don’t enjoy. If I don’t use my experience to speak out for them I become an enabler and not a solution.
I can fight for curb-cuts, I can argue for a more inclusive community, I can engage policy makers and challenge them when they choose to turn a blind eye. I can speak up when I see situations that are governed by “policy” rather than the needs of the person. I can deal with some of my own emotional turmoil, which tends to be created by a society in denial, by speaking out and reminding them of past developments. I know my history, I know my rights and I am very aware of the tools available to me to defend myself. I know how to suppress my feelings and when to let them fly, many new to this world don’t.
So when I came across the Verna Marzo story in the news today I became livid. I can’t even begin to imagine how much dread she must live with. For her condo association to deny something as simple as an automatic door opener to provide her, not only security, but enhanced peace of mind infuriates me. But then I realize by staying quiet I am part of this problem. People shouldn’t have to go running to the Human Rights Commission every time someone decides they can abuse that person. And that denial by her condo management company is ABUSE. I am livid and really have to question how long people are going to stay silent to this type of abuse.
We have rules and regulations for a reason. That reason shouldn’t be based on “convenience” for some but a barrier to others. I’m tired of platitudes, I’m tired of being seen as an “inspiration”, that’s fine for the poster philosophy but doesn’t pay the bills or make my neighbourhood more inclusive. Yes I am angry. I get angry every time the City allows a developer to build an 80 unit condo complex but ignore accessibility standards. If you ignore the building guidelines for accessible bathrooms you save enough space to add three more suites. Follow the money…
Verna Marzo is early in her experience however she is already learning there is little incentive in todays society to strive for independence. The disabled have become a product where there is a better return on investment for the healthcare industry than there is in the esteem of the person working hard to be part of an inclusive society. So for all of that silence out there, you are complicit. Your complacency is denying others their own self-worth. When you spend all of your emotional and physical energy trying to be part of a community, is it really a community I want to be part of.
I think I better stop writing for now…
A Poster Child's Perspective 